Frequently Asked Questions
CONTACT: Treatment Advocacy Center
703 294 6001 (p), 703 294 6010 (f), [email protected]
About the Treatment Advocacy Center
- What is the Treatment Advocacy Center?
- What are the primary activities of the Treatment Advocacy Center?
- Why does TAC focus on assisting those with SEVERE mental illnesses?
- Who is on the board of directors for the Treatment Advocacy Center?
- Where does the Treatment Advocacy Center get its funding?
- Does the Treatment Advocacy Center take money from pharmaceutical companies?
- What other groups support the Treatment Advocacy Center?
- Does talking about instances of violence stigmatize the mentally ill?
- I want to help the Treatment Advocacy Center with its mission. What can I do?
- How do I contribute?
- Where do I obtain a copy of the Treatment Advocacy Center's IRS form 990?
- How many people in the United States have severe mental illnesses?
- What defines a mental illness as severe?
- What is schizophrenia?
- What is bipolar disorder/manic depression?
- What is schizoaffective disorder?
- Can mental illness be treated?
- How many people with severe mental illnesses go untreated?
- Why would someone with a severe mental illness refuse treatment?
About assisted outpatient treatment
- What is assisted outpatient treatment?
- Does assisted outpatient treatment take away someone's civil rights?
- What do people who have been helped through assisted treatment think about AOT?
- Which states have laws supporting assisted outpatient treatment?
- Do the states that have AOT use it?
- Does assisted outpatient treatment work?
- Will assisted outpatient treatment fill up hospitals with people with mental illness?
- Will assisted outpatient treatment put more people with severe mental illness on the streets?
- Is assisted outpatient treatment expensive?
- Is assisted outpatient treatment constitutional?
- Why do so many people with severe mental illnesses go untreated?
Have a question that is not answered here? Let us know - we will respond within two business days.
About the Treatment Advocacy Center
What is the Treatment Advocacy Center?
The Treatment Advocacy Center is a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illnesses. TAC promotes laws, policies, and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder. Our full mission statement ... and our brochure ...
What are the primary activities of the Treatment Advocacy Center?
The principal activities of TAC include educating policymakers and judges about the true nature of severe brain disorders, advanced treatments available for those illnesses, and the necessity of community ordered treatment in some cases; assisting individuals in states working to promote laws that enable individuals with the most severe brain disorders to receive assisted treatment; promoting innovative approaches to diverting the psychiatrically ill away from the criminal justice system and into appropriate treatment; ensuring that individuals receive adequate psychiatric services and maintain medication compliance upon release from hospitals; and supporting the development of innovative treatmetns for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder. Our full mission statement ... and our brochure ...
Why does TAC focus on assisting those with SEVERE mental illnesses?
TAC focuses on the subpopulation of those with the most severe mental illnesses - people whose brain disorders are the most severe and debilitating. Often, this is the group underserved by the mental health advocacy community at large. This is also the group most likely to benefit from tools like assisted outpatient treatment.
Who is on the board of directors for the Treatment Advocacy Center?
TAC's board of directors is made up of mental health advocates, consumers, medical professionals, and representatives of law enforcement and the courts. For more information, see a full list of board members and read their bios. We also have an honorary advisory committee.
Where does the Treatment Advocacy Center get its funding?
The Treatment Advocacy Center is funded by a host of individual donors and grants, including The Stanley Foundation. Since its inception, the Treatment Advocacy Center has not accepted funding from pharmaceutical companies or entities involved in the sale, marketing or distribution of such products. This stance is unusual in the mental health advocacy field.
Does the Treatment Advocacy Center take money from pharmaceutical companies?
No. The Treatment Advocacy Center does not accept funding from pharmaceutical companies or entities involved in the sale, marketing or distribution of such products. This stance is unusual in the mental health advocacy field.
Does talking about instances of violence stigmatize the mentally ill?
The public's association of mental illness with violence is probably the major cause of stigma against mentally ill individuals. This association is very strong and has apparently increased in recent years. The most likely reason for this increasing stigma is an increasing incidence of violent crimes committed by seriously mentally ill individuals who are not receiving treatment for their psychiatric disorders. Therefore, the most effective way to decrease stigma is to reduce the incidence of such violent crimes; this can be done by utilizing various forms of assisted treatment.
I want to help the Treatment Advocacy Center with its mission. What can I do?
You may want to sign up for TAC's free weekly email newsletter, e-news, or our periodic hardcopynewsletter, Catalyst, to keep on top of the campaigns we are supporting. We are especially pleased to work with advocates and family members in states with no AOT or poor assisted treatment laws to advocate for change.
Most importantly, if you have a story to tell of how assisted treatment helped you or someone you love, please share it with your legislators. We can help you craft a letter and get it to the right people. Just let us know that you are interested.
You can also donate to TAC - via the website or through regular mail.
How do I contribute?
You can donate to TAC - via the website or through regular mail. Please be sure to indicate if you would like the donation to be made "In Honor Of" or "In Memory Of" a special person. "In Honor Of" and "In Memory Of" gifts will be published in our periodic hardcopy newsletter, Catalyst.
The Treatment Advocacy Center is a nonprofit 501(c)(3) organization. Gifts are tax-deductible to the extent allowed by law. IMPORTANT NOTICE: The Treatment Advocacy Center does not accept funding from pharmaceutical companies or entities involved in the sale, marketing or distribution of such products. Thank you for considering supporting the Treatment Advocacy Center.
Where do I obtain a copy of the Treatment Advocacy Center's IRS form 990?
You may find a copy of our IRS Form 990 on www.guidestar.org.
back to FAQ contents | severe mental illness | assisted outpatient treatment
consequences of lack of treatment | family members and consumers | about TAC
How many people in the
United States have severe mental illnesses?
Approximately 4.5 million individuals in the United States have severe mental illness,
either schizophrenia or manic-depressive illness (bipolar disorder).
What defines a mental illness as severe?
In 1999, the Surgeon General’s Report on Mental Health reported that “a subpopulation of 5.4 percent of adults is considered to have a ‘serious’ mental illness (SMI)” and “about half of those with SMI (or 2.6 percent of all adults) were identified as being even more seriously affected, that is, by having ‘severe and persistent’ mental illness (SPMI).” The report further specified that SPMI “includes schizophrenia, bipolar disorder, other severe forms of depression, panic disorder, and obsessive-compulsive disorder.”
What is
schizophrenia?
Schizophrenia is a neurological brain disorder that affects 2.2 million Americans today,
or approximately one percent of the population. Schizophrenia can affect anyone at any
age, but most cases develop between ages 16 and 30. Schizophrenia interferes with a
person's ability to think clearly, manage emotions, make decisions, and relate to others.
Specific abnormalities that can be noted in individuals with schizophrenia include
delusions and hallucinations; alterations of the senses; an inability to sort and
interpret incoming sensations, and an inability therefore to respond appropriately; an
altered sense of self; and changes in emotions, movements and behavior. More …
What is bipolar
disorder/manic depression?
Manic depressive illness (or bipolar disorder) is a neurological brain disorder that
affects 2.3 million Americans today, or approximately one percent of the population. While
manic-depressive illness usually begins in adolescence or early adulthood, it can
sometimes start in early childhood or as late as age 40 or 50. Individuals diagnosed with
manic-depressive illness, or bipolar disorder, have mood swings that alternate from
periods of severe highs (mania) to extreme lows (depression). These mood swings, which are
often out of proportion or totally unrelated to events in a person's life, affect
thoughts, feelings, physical health, behavior, and functioning. More …
What is
schizoaffective disorder?
Schizoaffective disorder is defined as having both severe mood swings (mania and/or
depression) and some of symptoms of schizophrenia.
Can mental illness
be treated?
Absolutely. While there is no cure for schizophrenia, it is a highly treatable disorder.
In fact, according to the National Advisory Mental Health Council, the treatment success
rate for schizophrenia is comparable to the treatment success rate for heart disease.
People who experience acute symptoms of schizophrenia may require intensive treatment,
sometimes including hospitalization. Hospitalization is necessary to treat severe
delusions or hallucinations, serious suicidal inclinations, inability to care for oneself,
or severe problems with drugs or alcohol. It is critical that people with schizophrenia
stay in treatment even after recovering from an acute episode. About 80 percent of those
who stop taking their medications after an acute episode will have a relapse within one
year, whereas only 30 percent of those who continue their medications will experience a
relapse in the same time period. Medication appears to improve the long-term prognosis for
many people with schizophrenia. Studies show that after 10 years of treatment, one-fourth
of those with schizophrenia have recovered completely, one-fourth have improved
considerably, and one-fourth have improved modestly. Fifteen percent have not improved,
and 10 percent are dead.
How many people with
severe mental illnesses go untreated?
Current federal and state policies hinder treatment for psychiatrically ill individuals
who are most at risk for homelessness, arrest, or suicide. As a result, 40% of the 4.5
million individuals with schizophrenia and manic-depressive illness (bipolar disorder), an
estimated 1.6 million people, are not being treated for their illness at any given time.
Why would someone with
a severe mental illness refuse treatment?
At least 40% of the 4.5 million people in the United States who are diagnosed with either
schizophrenia or manic-depression, the two severest forms of mental illness, do not and
cannot realize they are sick because the illness affects their brain's frontal-lobe
function, which is necessary to make that determination. Because they do not know they are
sick, they refuse medication and often deteriorate. The neurological term for this is "anosognosia," derived from the Greek for "loss of knowledge." More ...
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| severe mental illness | assisted outpatient
treatment
consequences of lack of treatment | family
members and consumers | about TAC
What is assisted
outpatient treatment?
Assisted outpatient treatment (also called things like involuntary outpatient commitment or mandated community treatment) promotes availability and accessibility for those that are
most at risk. It allows the courts to order outpatient treatment for people with severe
mental illnesses who are least able to help themselves or most likely to present a risk to
others, giving family members and the mental health community a tool to help very sick
people who cannot make their own medical decisions. At least 40% of the 4.5 million people
in the United States who are diagnosed with either schizophrenia or manic-depression, the
two severest forms of mental illness, do not and cannot realize they are sick because the
illness affects their brain's frontal-lobe function, which is necessary to make that
determination. Because they do not know they are sick, they refuse medication and often
deteriorate. Assisted outpatient treatment commits the patient to the treatment system,
but it also commits the treatment system to the patient. Read more ...
Does assisted
outpatient treatment take away someone's civil rights?
No. It is the illness, not the treatment, that restricts civil liberties. Medicines can
free individuals from the prison of their psychosis and enable them to engage in a
meaningful exercise of their civil liberties. Assisted outpatient treatment cuts the need
for incarceration, restraints, and involuntary inpatient commitment, allowing individuals
to retain more of their civil liberties.
What do people who have
been helped through assisted treatment think about AOT?
There are a variety of viewpoints within the consumer community. Some consumers oppose
assisted treatment. Others support assisted treatment. The Treatment Advocacy Center has
consumers on its board and staff and in its membership, all of who support wider use of
this valuable treatment mechanism. A study reported in the February 7, 1997, issue of Psychiatric
News of forcibly treated, discharged psychiatric patients found that 60 percent
retrospectively favored having been treated against their will.
The most compelling argument for assisted outpatient treatment comes from those consumers who’ve actually participated in an AOT program. Researchers with the New York State Psychiatric Institute and Columbia University conducted face-to-face interviews with AOT recipients in New York to assess their opinions about the program, perceptions of coercion or stigma associated with the court order and, most importantly, quality of life as a result of AOT. While the interviews showed that the experience of being court-ordered into treatment made about half of recipients feel angry or embarrassed, after they received treatment, AOT recipients overwhelmingly endorsed the effect of the program on their lives:
- 75 percent reported that AOT helped them gain control over their lives;
- 81 percent said that AOT helped them to get and stay well; and
- 90 percent said AOT made them more likely to keep appointments and take medication.
Additionally, 87 percent said they were confident in their case manager’s ability to help them; and 88 percent said that they and their case manager agreed on what is important for them to work on. More ...
Which states have
laws supporting assisted outpatient treatment?
Every state has a law supporting assisted outpatient treatment except for eight -
Connecticut, Maine, Maryland, Massachusetts, Nevada, New Jersey, New Mexico, and
Tennessee. See TAC's state-by-state summary (also in PDF) for more details
and relevant code sections.
Do the states that have AOT use it?
No, all states with AOT laws do not use them. Often this stems from lack of education or misinformation; sometimes because of the way a law is written it is difficult to use.
Does assisted
outpatient treatment work?
Yes.
Studies and experiences in Arizona, Hawaii, Iowa, New York, North Carolina, and other states have definitively proven assisted outpatient treatment works. For example, in New York, during the course of court-ordered treatment when compared to the three years prior to participation in the program, AOT recipients experienced far less hospitalization, homelessness, arrest, and incarceration. Specifically, of those in the AOT program:
- 74 percent fewer experienced homelessness;
- 77 percent fewer experienced psychiatric hospitalization;
- 83 percent fewer experienced arrest; and
- 87 percent fewer experienced incarceration.
Why don't people with severe mental illnesses get treatment in psychiatric facilities?
Beginning in 1955 with the widespread introduction of the first, effective antipsychotic medication chlorpromazine, or Thorazine, the stage was set for moving patients out of hospital settings. The pace of deinstitutionalization accelerated significantly following the enactment of Medicaid and Medicare a decade later. There was a wholesale emptying of state psychiatric hospitals in the mid-1960s and another wave of discharges in the early 1990s. Few beds remain, the waiting lists are long - that is why we need another solution for people who are able to receive treatment on an outpatient basis.
Will assisted
outpatient treatment fill up hospitals with people with mental illness?
No. Assisted outpatient treatment (AOT) is designed to help people function successfully out of the hospital. It helps those with a history of noncompliance with medications to adhere to a treatment plan and helps prevent them from decompensating and becoming rehospitalized. For example, participants in New York’s AOT program, Kendra’s Law, experienced a 77 percent decrease in psychiatric hospitalizations while in the program, as compared to the three years prior to AOT. In a North Carolina study, long-term AOT combined with routine outpatient services (three or more outpatient visits per month) reduced hospital admissions by 57 percent and length of hospital stay by 20 days compared to individuals without court-ordered treatment. The results were even more dramatic for individuals with schizophrenia and other psychotic disorders for whom long-term AOT reduced hospital admissions by 72 percent and length of hospital stay by 28 days compared to individuals without court-ordered treatment.
Will assisted
outpatient treatment put more people with severe mental illness on the streets?
No. Inpatient hospitalization will still be needed for those incapable of surviving safely
in the community. Assisted outpatient treatment facilitates early short-term
rehospitalization for those noncompliant and likely to become dangerous.
Is assisted outpatient
treatment expensive?
Assisted treatment is not expensive because it does not mandate any services that
individuals with brain disorders are not already entitled to (example: case management,
medications, rehabilitation). Assisted outpatient treatment orders merely require the
system to facilitate compliance for non-compliant individuals by giving them the services
they need to keep well and the surrounding community safe. Individuals subject to assisted
treatment orders rarely violate the orders and hence interventions are infrequent. The
data are also clear that the savings in hospital costs, forensic costs and other costs far
offset any incremental cost of assisted treatment.
In an article in Schizophrenia Bulletin, Dr. Peter Weiden and Dr. Mark Olfson calculated that nationwide, over two years, the direct costs of rehospitalization attributable to neuroleptic noncompliance is approximately $700 million with $370 million for the first year and $335 million for the second. By increasing compliance, assisted outpatient treatment can generate savings that could be reinvested in the community.
Is assisted
outpatient treatment constitutional?
Yes. Forty-two states and the District of Columbia have assisted outpatient treatment
laws– some almost 20 years old. The U.S. Supreme Court has not overturned any of these laws.
At the state level, AOT laws have been upheld wherever challenged. For instance, Kendra’s Law in New York has been upheld through a series of challenges. With the latest ruling In the Matter of K.L., a total of twelve judges in New York have examined the constitutionality of Kendra’s Law; each of them has found the law constitutional, including the state’s highest-ranking ones. More ...
Why do so many people
with severe mental illnesses go untreated?
The primary reasons for lack of treatment are threefold.
- Schizophrenia and manic-depressive illness can severely impair an individual's self-awareness, causing many to believe they are healthy and not in need of medical care. Their brain disease has impaired their brain function, and since they do not think they are sick, many of them do not actively seek treatment and often refuse it. The neurological term for this is "anosognosia," derived from the Greek for "loss of knowledge."
- Civil rights advocates have changed state laws and practices to such an extent that it is now virtually impossible to treat such individuals unless they first commit a violent act.
- Public psychiatric services have deteriorated significantly in recent years with the closure of state psychiatric hospitals. While these much needed hospital beds have been eliminated, there has been no increase in outpatient services. In addition, the failure of for-profit managed care companies to provide services to these individuals who need them most has only further exacerbated the situation.
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| severe mental illness | assisted outpatient
treatment
consequences of lack of treatment | family
members and consumers | about TAC
Consequences of lack of treatment
How many homeless people
have severe mental illnesses?
People with untreated psychiatric illnesses comprise one-third, or 200,000 people, of the
estimated 600,000 homeless population. The quality of life for these individuals is
abysmal. Many are victimized regularly. One study has found that 28 percent of
homeless people with previous psychiatric hospitalizations obtained some food from garbage
cans and eight percent used garbage cans as a primary food source.
These 200,000 individuals comprise more than the entire population of many U.S. cities, such as Hartford, Connecticut; Charleston, South Carolina; Reno, Nevada; Boise, Idaho; Scottsdale, Arizona; Orlando, Florida; Winston Salem, North Carolina; Ann Arbor, Michigan; Abilene, Texas or Topeka, Kansas. More ...
How many people in jails
or prisons have severe mental illnesses?
People with untreated serious brain disorders comprise approximately 16 percent of the
total jail and prison inmate population, or nearly 300,000 individuals. These individuals
are often incarcerated with misdemeanor charges, but sometimes with felony charges, caused
by their psychotic thinking. People with untreated psychiatric illnesses spend twice as
much time in jail than non-ill individuals and are more likely to commit suicide. More ...
Are people with mental
illness dangerous?
When undergoing treatment, people with severe mental illnesses are no more dangerous than
the general population. When untreated, this is no longer the case. Anecdotally, incidences of violence appear in our newspapers every day.
The relative risk of violence is higher for severely mentally ill patients (specifically those with diagnoses involving psychoses) than for the general public. The CATIE violence study found that patients with schizophrenia were 10 times more likely to engage in violent behavior than the general public. Schizophrenia patients experiencing certain positive symptoms (hallucinations, paranoid delusions, and grandiosity) were 9 times more likely to have an episode of serious violent behavior than patients who had negative symptoms (apathy, social withdrawal, poverty of thoughts, blunting of emotions, slowness of movement, and lack of drive).
How often do people with
mental illness commit suicide?
Suicide is the number one cause of premature death among people with schizophrenia, with
an estimated 10 percent to 13 percent killing themselves. Suicide is even more pervasive
in individuals with bipolar disorder, with 15 percent to 17 percent taking their own
lives. The extreme depression and psychoses that can result due to lack of treatment are
the usual causes of death. These suicides rates can be compared to the general population,
which is somewhere around 1 percent. It is estimated that adequate psychiatric treatment
could save up to 5,000 lives per year. More ...
Are severe mental illnesses
expensive for society?
Schizophrenia and manic-depressive illness are expensive diseases. The cost of
schizophrenia alone is comparable to the cost of arthritis or coronary artery disease
(D.J. Kupfer and F.E. Bloom, eds., Psychopharmacology: The Fourth Generation of Progress,
1995): schizophrenia costs $33 billion per year; arthritis costs $38 billion per year; and
coronary artery disease costs $43 billion per year. The costs included both direct costs
of treatment as well as indirect costs such as lost productivity.
Severe psychiatric disorders such as schizophrenia and manic-depressive illness are costly three times over: Society must raise and educate the individual destined to become afflicted; people with the illnesses are often unable to contribute economically to society; and many require costly services from society for the rest of their lives. More …
back to FAQ contents | severe mental illness | assisted outpatient treatment
consequences of lack of treatment | family members and consumers | about TAC
For family members and consumers
My family member has
schizophrenia/bipolar disorder and refuses to take medication. Can you help me?
EXCERPT FROM: FIGHTING FOR TREATMENT What treatment options are available? A person seeking the best possible care for a person suffering from a severe mental illness must first research what treatment options are available. The best and most obvious place to turn is to the professionals presently managing the person’s care, but that is only the beginning of a thorough investigation. The leaders and staff of local NAMI affiliates will not only be familiar with service options, but may offer a better “real world” assessment of what is available than employees of mental health departments, hospitals, or private community providers. Another basic resource is state or local mental health administrators. What are the eligibility criteria? Most specialized services (such as PACT or ACT teams) are reserved for specific populations. Those advocating for a particular service must also learn the eligibility criteria for these programs. Does your loved one meet the criteria? Don’t assume the answer is “no.” Ask for written policies governing eligibility. Use the person’s treatment history (for example, repeat hospitalizations) to establish whether they are eligible for those services. Never accept a first answer, and know what questions to ask. For example, does the community have intensive case managers, intensive family support services, and residential support services? Visit the local mental health center or mental health service providers and request a tour. |
The first step is understanding the law in your state. TAC lists state statutes for all states and analyses for many in our Legal Resources section.
There are many good resources on our advocates page.
TAC also produced a special issue of our newsletter specifically for families dealing with crises. It includes a feature article on preparing for crisis and fighting for treatment, with some checklists and instructions on pulling together a CARE kit in case you ever need it; and information on a new study showing that assisted outpatient treatment (AOT) reduces caregiver strain. There is hard data on New York’s successes with AOT and a detailed legal article on navigating the HIPPA privacy law, which many people ask us about.
Another good resource is the book by Dr. Xavier Amador, "I Am Not Sick I Don't Need Help!" This new book is a must read for families and caregivers trying to cope with a loved one with mental illness who refuses treatment because they do not believe that they are ill.
There are many good resources available to help individual families as they struggle to understand a new diagnosis.
One incredible resource are the books by Dr. E. Fuller Torrey, president of the Treatment Advocacy Center and a world-respected expert specializing in schizophrenia and manic-depressive illness. Two of his books are especially good at the early stages of understanding these diseases. [NOTE: We offer you direct links to Amazon for your convenience, and because Amazon donates a small amount of money to the Treatment Advocacy Center for books purchased through these links. You can also check your local library.]
-
Surviving Schizophrenia : A Manual for Families, Consumers and Providers
5th edition - order it on Amazon or get it at your local library
by E. Fuller Torrey, M.D.
576 pages,5th edition (March 28, 2006),Collins, ISBN: 0060842598
"A comprehensive, realistic, and compassionate approach... Should be of tremendous value to anyone who must confront these questions." - Psychology Times
"E. Fuller Torrey is a brilliant writer. There is no one writing on psychology today whom I would rather read." - Los Angeles Times
- Surviving Manic Depression: A Manual on Bipolar Disorder for Patients, Families, and Providers
by E. Fuller Torrey, M.D.
416 pages,. January 8, 2002, Basic Books, ISBN: 0465086632
"A lucid, thorough guide to every aspect of living with bipolar disorder ... [this book] covers symptoms, treatment and advocacy ... [The book] explain[s] what mania and depression feel like from the inside, the causes and risk factors, the range of possible medications and treatments, and 10 special problems for manic depressives like alcohol abuse and medical noncompliance. There's also a section on bipolar disorder in children and a list of frequently asked questions. This is a valuable resource for anyone touched by the illness." - Publishers Weekly
The National Alliance for the Mentally Ill runs a helpline, an information and referral service, that can refer you to local chapters for support and provide you with general information. Call 1-800-950-NAMI (6264) (open M-F, 10am-5pm, eastern time).
Other books that we recommend include Crazy, a memoir and expose by a father struggling to understand the system.
How do I share my
personal story with the Treatment Advocacy Center?
Feel free to send your personal story to TAC by email at [email protected], by fax at 703 294 6010, or by general mail to The Treatment Advocacy Center, 200 N. Glebe Road, Suite 730, Arlington, VA 22203. Please include permission for us to share your story - you may want to read the stories that others have sent us on the web site.
back to FAQ contents
| severe mental illness | assisted outpatient
treatment
consequences of lack of treatment | family
members and consumers | about TAC
Have a question that is not answered here? Let us know - we will respond within two business days.
The Treatment Advocacy Center
200 North Glebe Road, Suite 730
Arlington, Virginia 22203
703 294 6001 - phone
703 294 6010 - fax
[email protected] - email
updated June 2006
