National Association for Rights Protection and Advocacy

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Read an essay about a family that abandoned a child in an institution in the 1930s. The author, a Washington Post editor, stumbled upon the long-kept secret of his aunt's existence. His 2009 book, Annie's Ghosts: A Journey Into a Family Secret, has been called "a riveting detective story, a moving family saga, an enlightening if heartbreaking chapter in the history of America's treatment of people [with disabilities]."


The Needs of People with Psychiatric Disabilities During and after Hurricanes Katrina and Rita: Position Paper and Recommendations - A report of the National Council on Disability, prepared and drafted by Susan Stefan and Ann Marshall of NARPA.


Read an essay sharply critical of the psychiatric industry, published in the medical journal,The Lancet. The article reviews two books: The Myth of the Chemical Cure: A Critique of Psychiatric Drug Treatment by Joanna Moncrieff and Side Effects: a Prosecutor, a Whistleblower, and a Bestselling Antidepressant on Trial by Alison Bass. Read the article here.


Prozac.org: how the pharmaceutical industry works behind the scenes to shape public policy and push drugs. An article by Ken Silverstein from Mother Jones Magazine.


Pharmaceutical giant Eli Lilly has been concealing information about the risks of its best-selling psychiatric drug and is intimidating health care advocates, researchers, and the media in an effort to keep this crucial data from regulators and the public. Read  about the Zyprexa documents case here Lilly's lawsuit against whistleblower Dr. David Egilman has been settled. Link to details.


Transformation:
Kathryn Cohan and Sylvia Caras are collaboratively writing on what many people who experience mood swings, fear, voices, and visions have come to know. 


Disability Rights and the Death Penalty


Bush plans to screen US population for mental illness
The British Medical Journal reports on the Bush administration's sweeping program (already being implemented) to screen all Americans for mental illness. Read about this new initiative and the role of the pharmaceutical industry.

Should all school children should be screened and labeled?
The final report of the New Freedom Commission on Mental Health, issued in 2004, calls for universal mental health screening of universal mental health screening of American children, and the Center for Mental Health Services and Congress are poised to take action...


Recent developments in psychopharmacology: A handout, prepared by Peter Stastny, M.D., from the NARPA 2003 workshop, "Strategies for Cross-Examining Psychiatrists in "Mental Health" Proceedings." Topics include

* Newly emergent side-effect profiles of "atypical" and older antipsychotics
* Increasing use of anti-epileptic medications for various indications
* Massive increase in psychopharmacological treatments for children and adolescents,
* New FDA-approved indications for SSRIs
* Polypharmacy - concomitant use of multiple agents
* Increased use of benzodiazepines in emergency situations


Press release (January 2002): White House Meets with NARPA Board members; Upcoming Nominations and Administration Inaction Top the Agenda


"Mindless and Deadly:" Media hype on mental illness and violence, by Phyllis Vine.-- from EXTRA! (the magazine of FAIR, Fairness and Accuracy in Reporting).

PARITY:  A position statement on the issue of parity for mental health care, from the California Network of Mental Health Clients (CNMHC).

Eli Lilly & Company is a major public menace: with its long rap sheet, the drug company must break some type of record measuring egregiousness. In early 2009, Lilly received the largest criminal fine ever imposed on a corporation. Read an article by Bruce Levine.


A clash between pharmaceutical company money and academic freedom: The David Healy affair: A discussion of academic freedom, corruption of clinical testing trials, and criticism of the SSRI group of drugs from within the psychiatric profession. At the center of this controversy is whistleblower Professor David Healy, a psychiatrist and the author of Let Them Eat Prozac, among numerous other publications.


APA Convention Used to Promote Drug Company Invention of Mental Health Epidemiology Facts and "No Effort Required" Diagnosis and Treatment

In conjunction with the 2002 American Psychiatric Association (APA) convention in Philadelphia several high visibility press releases were issued designed to become the source of news articles in the mainstream press. Given the overwhelming drug company sponsorship both of the convention and the "research" that has been highlighted it should be no great surprise that they purport to demonstrate that more people then ever before have mental illnesses that benefit from drug treatment and that diagnosis can be expedited so that the diagnostic process fits well into the all too typical seven minute office visit. Read the complete article, written by Vicki Fox Smith for MadNation.


 

Read the NY Daily News story, "Kings County Hospital doctors, nurses facing charges in Esmin Green death-by-neglect case." And read the NYC Department of Investigation's report.


If It Pays For Force, It Isn't Parity -- Why we should be careful when we ask for mental health parity...  An article by Vicki Fox Wieselthier of MadNation, an organization of people working together for social justice and human rights in mental health.


Read the award-winning five-part investigative report, "Deadly Restraint," from the Hartford Courant.

Deadly Restraint: A Hartford Courant Investigative Report

* Day One; October 11: A Nationwide Pattern of Death
* Day Two; October 12: Little Training, Few Standards, Poor Staffing Put Lives At Risk
* Day Three; October 13: Patients Suffer In A System Without Oversight
* Day Four; October 14: People Die And Nothing Is Done
* Day Five; October 15: From "Enforcer" To Counselor
* Related Article: October 17: Reform Urged in Use of Restraints: U.S. Lawmakers Respond to Report on Deaths
* Related Article: October 24: Groups Call for Reforms in Use of Restraints: Mental Health Providers React to Reports of 142 Deaths in Facilities
* Related Article:  December 16: Use of Improper Restraints Widespread, Groups Say
* How the Courant Conducted Its Investigation
* Glossary of Terms" used by the authors
* Investigation Database


See excerpts from the Amnesty International report: Mentally ill or homeless: vulnerable to police abuse. But, also read about AI's lack of concern for the rights of people in the mental health system

 


The Americans with Disabilities Act under attack: For up to the minute information, see the Bazelon Center for Mental Health Law.

The Supreme Court's 5-4 decision in University of Alabama v. Garrett was handed down in February 2001.

The decision concerns discrimination in the employment context by states. It does not effect claims against private employers. The Court said individuals cannot sue the state for damages under Title I of the ADA (employment discrimination cases). It appears that lawsuits intended to change a states' discriminatory behavior or policy (injunctive relief) may still survive in the wake of Garrett. In addition, the Court's decision did not concern touch Title II or Title III of the ADA (E.g., Olmstead (right to be in most integrative setting) remains good law and remains in effect).

Click here to read the 60 page decision of the Supreme Court.

Read  the New York Times' editorial on the Court's decision. Click here for a transcript of the oral argument at the Supreme Court. Click here to read the Washington Post's account of the oral argument in the Supreme Court. For more, including an analysis of the decision and links to the briefs filed in the case, go to the Bazelon Center's Garrett page. For a good description of the oral argument, listen to National Public Radio’s Nina Totenberg at http://www.npr.org/ramfiles/atc/20001011.atc.13.rmm - requires RealAudio, which you can download free.

Read the amicus brief submitted by NARPA and other organizations.


New York's Office of Mental Health continues to push forced electroshock with a vengeance.

On May 18, 2001 the New York State legislature held public hearings regarding electroshock. Read the testimony of neurologist John Friedberg, M.D.,author and shock survivor Leonard Roy Frank, advocate and NARPA administrator Anne Krauss, and others.

The latest case is that of activist Paul Henri Thomas, who is being held at Pilgrim Psychiatric Center. In April a state court judge granted an order authorizing the state hospital to forcibly administer up to 40 electroshock treatments to Mr. Thomas. Thomas has appealed to the appellate court, which has issued a temporary stay of the lower court's order pending a hearing by a four-judge panel. Read more.

The state has also been interfering with Mr. Thomas' right to associate with friends and supporters. In late March, a federal civil rights action was filed against state OMH officials, charging that Thomas' First Amendment rights have been continually violated. Newsday and the New York Post have continued to cover this story. http://www.ect.org/news/newsday.html

Read the latest updates and alerts compiled by Support Coalition International; also see http://www.ect.org/ for information about this case and about electroshock in general.


The struggle to stop community forced drugging (outpatient commitment) laws:

Folks in California and Connecticut can breath a huge sigh of relief, as outpatient commitment initiatives in their states were beaten back this year. But the proponents of community forced drugging laws are not going away -- in those or other states.

See an article by attorneys and long-time NARPA members Dennis Feld and Kim Darrow about New York State’s involuntary outpatient commitment ("IOC") statute, also known as "Kendra’s Law" and "assisted outpatient treatment" ("AOT"), whcih went into effect in November, 1999. (Note: a September 2000 decision has upheld the statute in the face of a constitutional challenge.)

Read a letter from researchers David Cohen and Michael McCubbin to California's Little Hoover Commission. There continues to be considerable pressure in that state to expand coercive powers, particularly with regard to outpatient treatment orders: powerful forces are pushing for license to forcibly drug people in the community and in their homes. The letter provides a thorough and thoughtful analysis of the scientific justifications for forced treatment.

On August 4, 1999, the New York State legislature passed a "Kendra's Law," which is expected to lead to the involuntary drugging of up to 4,000 people with psychiatric labels living in the community, even in their own homes. With "Kendra's Law," mental hygiene courts now have unprecedented powers over the lives of the mentally ill-and a long track record of shutting them out -- Read an article from City Limits Magazine.

Advocates in New York struggled long and hard against the highly organized and ultimately successful effort to strip away the rights of people diagnosed with serious mental illness. NARPA was one of many members of New York's Coalition To Stop Outpatient Commitment.

Click here to read testimony at a public hearing in New York City; also an article from the Hartford Courant, in Connecticut, where advocates fought and won yet another battle against involuntary outpatient commitment and forced drugging; Forced Treatment Doesn't Work, an article from the Washingtom Post by Michael Allen, of the Bazelon Center and Vicki Fox Wieselthier, advocate and activist; letters to the editor on the subject; and the New York Times report on the passage of New York State's outpatient commitment law. See the Bazelon Center for Mental Health Law's Position on Involuntary Outpatient Commitment. See the report of Connecticut's Task Force on Involuntary Outpatinet Commitment and Alternatives.


"When depression turns deadly" -- an article from the Toronto Globe and Mail... "company scientists were pressured by executives to soften physicians' reports of suicidal thoughts or suicide attempts;"  "some scientists believe patients should be warned that the drugs may pose just such a risk to hundreds, perhaps thousands, leaving the families to cope with tragedy..."

Prozac Revisited: As the drug gets remade, concerns about suicides surface. . .  Just as the 14-year patent on Prozac is about to expire and the drug's maker, Eli Lilly and Co., is preparing to launch a new version, a body of evidence has come to light revealing the antidepressant's dark side and that Lilly has known for years of the drug's potentially lethal side-effects.

From the Boston Globe, May 7, 2000, page 1

Eli Lilly claims the new version of Prozac "eliminates side effects of existing Prozac, including violent and suicidal thoughts among a small percentage of users." Read, "Prozac data kept from trial, suit says" (Boston Globe, June 8, 2000, p. 1).


HIGH RISK EXPERIMENTS ON CHILDREN WITH NO MEDICAL DIAGNOSIS

At Yale University, researchers are giving neuroleptic drugs experimentally to 12 year old children who are not even diagnosed as having an illness. Despite the fact that psychiatrists cannot accurately diagnose "schizophrenia", much less predict who will get it, they are enthusiastic about prescribing these powerful drugs to children they designate as "at-risk" for developing it. This study puts healthy children at risk by giving them powerful, mind-altering drugs that cause harmful side effects. Citizens for Responsible Care & Research (CIRCARE) wrote the federal government’s Office of Protection from Research Risks (OPRR) seeking an investigation, describing the ongoing experimentation at Yale as highly unethical. The OPRR made headlines recently for shutting down numerous experiments it determined to be unethical or unnecessarily harmful. Click here to read CIRCARE's letter


Read about the controversy surrounding a major flaw in the Surgeon General's "Report on Mental Health." One of the the most serious errors in the report is the statement that ECT (electroshock treatment) is safe and effective. Read an article in the New York Times about the issue; click here to read a letter from NARPA to the Surgeon General (Oct. 1999).


June 1999

ADA Victory in the Supreme Court:  Olmstead v. L.C.

The U.S. Supreme Court handed down its decision in Olmstead v. L.C.  The ruling upholds a key civil rights provision in the Americans with Disabilities Act, known as the community integration mandate, which maintains that individuals with disabilities must be offered services in the "most integrated setting."  If state experts say community-based treatment is appropriate, if the individual does not want to stay in the large facility, and if moving the person can be reasonably accommodated, the state can not force the person to stay in the institution.

In a 6-3 opinion authored by Justice Ruth Bader Ginsburg, the court affirmed the Eleventh Circuit's holding that unjustified isolation of individuals with disabilities is properly regarded as discrimination based on disability. The court held that unjustified segregation in institutions is discrimination not only because it perpetuates unwarranted assumptions that people with disabilities are incapable or unworthy of participating in community life, but also because confinement in an institution severely curtails everyday life activities, such as family relations, social contacts, work, educational advancement and cultural enrichment.

In upholding the integration mandate, the court has reinforced the fundamental intent of the ADA, which is to prevent discrimination and promote the integration of people with disabilities into our communities. Thus, the ruling supports the lower court's holding that Georgia's Department of Human Resources (DHR) may not segregate two women with mental disabilities in a state psychiatric hospital long after the agency's own treatment professionals had recommended their transfer to community care.

The case was brought by two women who were patients in a state hospital in Georgia. Their treating professionals agreed that the women should be served in community programs, but no slots were available for them. Georgia, and a number of other states argued that, while "virtually any person can safely and appropriately be served in his or her home (or in the most integrated community setting)," the cost of doing so would be unduly burdensome. See NARPA's ADA Case of the Week for an analysis of the decision of the U.S. Court of Appeals for the Eleventh Circuit.

More on Olmstead and community integration...


Re. Dangerous research on human subjects:

Doing Harm: Vulnerable psychiatric patients are being used as guinea pigs for experimental drugs at clinics, large and small, throughout the United States. Read the first of a four-part series and find out who the doctors in charge are, why it’s being allowed to happen and who’s looking out for the patients. See the Boston Globe's four-part series. (Whitaker, R. and Kong, D. 1998 Doing Harm: Research on the Mentally Ill. Investigative series. Boston Globe, November 15-18, front page.)
[Found on the web, DOING HARM: RESEARCH ON THE MENTALLY ILL Testing takes human toll, 11/15/98]

Re. financial conflicts of interest of university researchers involved in these studies:

Drug companies enrich university researchers In a typical scenario repeated at university research centers nationwide, authors of studies published in prestigious medical journals (that fail to disclose financial ties with the manufacturer of the drugs being evaluated) and their employers are enriched by the manufacturers of the drugs they study...


From the American Psychiatric Association's newspaper, The Psychiatric News"APA to Release Resource Document on Psychiatric Research Ethics." 


They said the experiments on young Black and Latino children in Harlem are over, yet some contend the experiments continue. Read "Our Children - Whose Guinea Pigs?" from the New York Amsterdam News, November 1998.


There was a Page 1 article on research abuse in the August 1, 1998, Washington Post, Research Volunteers Unwittingly at Risk:

"...a stunning example of medical research run amok: Physicians in New York offered to give Toys R Us gift certificates to 36 healthy black and Hispanic elementary school pupils if the children agreed to enroll in a medical study that required them to take a potentially life-threatening drug.  The three-year study, recently revealed by a patient advocacy group, brought back memories of the infamous Tuskegee experiments that came to light in the 1970s, in which doctors withheld syphilis treatments from black men so they could observe the disease's progression."

April 1998: Dangerous and non-therapeutic psychiatric experimentation on African-American and Latino children has been taking place at the New York State Psychiatric Institute and at other institutions in New York City.  Read a letter from New York advocates to the Federal government's Division of Human Subject Protections of the Office of Protection from Research Risks regarding current studies on healthy children that are wholly non-therapeutic, invasive, and potentially dangerous.  This issue was covered in the New York Post (4/14/98), Newsday (4/14/98), and the New York Times (4/15/98).  

December 1999 Update: Responding to complaints of Congressman Edolphus Towns and nine other members of Congress, as well as the complaint of Disability Advocates, Inc., that the OPRR erred when it exonerated the fenfluramine challenges conducted by the New York Psychiatric Institute exclusively on minority children, the federal government announced that it will appoint an advisory committee to review the conduct of fenfluramine challenges conducted entirely in minority populations. Read the letter from Assistant Secretary for Health & Surgeon General, David Satcher, M.D., Ph.D.
                           
May 1998: There is more news on these studies: The Village Voice ran a feature article, "Half-Truths and Consequences: Did Doctors Mislead the Parents of Kids They Experimented On?" (4/30/98), and there is an article in Newsday (4/29/98) "Parents Never Knew of Test Risks / Study didn't warn of deadly side effect."   For the moment, Psychiatric Institute has halted its study...

Note: There was a panel presentation, "Human Guinea Pigs in Psychiatric Research," at NARPA's Rights Conference in November 1998, with Ruth Lowenkron, of NY Lawyers for the Public Interest and Cliff Zucker, of Disability Advocates, Inc., and Vera Hassner Sharav, director of Citizens for Responsible Care in Psychiatry and Research. Recent public attention to these abuses and the exposure of the New York experiments is largely due to the hard work of these individuals


Prozac Surge Among Kids -- from the Los Angeles Times.  Between 1994 and 1997, the number of patients under 18 receiving prescriptions for the three most common antidepressants -- serotonin-based drugs called SSRIs -- more than doubled between 1994 and 1997.

Exit Joe Camel, Enter Joe Prozac, an article by Arianna Huffington discussing the pharmaceutical industry's advertising campaign for Prozac, and the push to get the drug approved by the FDA for children.


Participants at White House Mental Health Conference Appeal for Justice -  The breakout session on civil rights was a ray of hope in a conference otherwise dominated by proponents of biochemical psychiatry, force, and coercion.... [June 1999]


"As a person with a disability, what I want is acceptance. When you speak of my life as a tragedy, you are robbing me of my dignity. I want you to see my potential, and to stop sensationalizing the family despair. I don't want to uplift you with my pain. If you can't love me as me, or accept me, or respect me, at least create a life for yourself separate from me. Today's family organized advocacy stigmatizes your loved one, me, you, all of us."

Read "The Downside of the Family-Organized Mental Illness Advocacy Movement," from the journal, Psychiatric Services (June 1998) by Sylvia Caras, a disability rights advocate, and coordinator of electronic mailing lists for The Madness Group. It's a thoughtful and personal look at the family-organized mental illness advocacy movement.


Forced Treatment: Symptom or Cure?  The Vermont legislature recently passed S. 103, a bill authorizing forced treatment (administration of medication) of people with psychiatric disabilities in community settings. The Independent, writes of the ongoing debate over outpatient commitment in Vermont.  Also, read the text of NARPA's statement made to the Vermont legislature about this legislation.  You can link to the text of the Vermont bill taken from the Senate Journal of April 13, 1998.


"All members of a democratic society have a fundamental right to complete quality health care of their own choosing..... We choose our own doctors and medication, we choose the places of our health care.  No denial of treatment ever. No forced treatment ever!"

Read the remarks of Justin Dart, leading disability rights activist and 1998 recipient of the Presidential Medal of  Freedom (President Clinton referred to Justin as "the father of the historic Americans with Disabilities Act"), from Washington, D.C., May 2nd 1998, at the "Walk the Walk" - No Force Counterprotest.


A "turf war" between psychologists and psychiatrists?  The Medical Model is embraced by many psychologists fearing that their industry is threatened by a psychiatric monopoly.   However, many  psychologists are opposed to initiatives to extend prescription privileges to psychologists (and the corresponding requirement that training of prospective psychologists emphasize psychopharmacology.)  The debate accompanying a bill that came before the California legislature highlights this issue. Update: As of early 2005, two states - New Mexico and Louisiana -  have implemented a prescriptive authority law and extended prescription privileges to psychologists.

And, on the same topic, read a Statement of the AAAPP, the American Association of Applied and Preventive Psychology, in opposition to laws that would extend prescription privileges to psychologists.



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