Posts tagged ‘Government’

FDA May Require Testing of Electroconvulsive “Therapy” Devices

You may remember a couple of posts I made last year at this time about the importance of speaking up when the FDA opened itself up to comments on the issue of reclassifying the as yet untested ECT (shock treatment) machines from a class III to a class II. The situation was simple — in all the years the machines have been in use, the industry has never had to prove that they are either safe or effective. For decades people have been having their frontal lobes assaulted by electricity in varying amounts from just plain dangerous to thoroughly destructive on machines with no standard of testing to ensure that they’re working as designed, much less designed to address any established clinical use at all. This is not only frightening but a terrible insult to the rights and safety of the approximately 100,000 people who face ECT each year in the US (by choice or force) and only serves those profiting from the shock industry. In essence, the hundreds of thousands of people who have undergone this so-called treatment are the experiment — the living test.

Well, the good news is that it seems that the FDA’s protection of the shock industry may be coming to an end…

Peter Breggin, MD for the Huffington Post:

Friday afternoon, January 28, 2011: The FDA’s panel for electroconvulsive therapy (ECT) voted to place ECT machines in Category III for all but one indication. If the FDA accepts the panel’s recommendation, the agency will require testing for all uses except “catatonia” which was recommended for Category II, requiring less stringent testing.

A tiebreaker by the chair was needed to propose putting ECT machines into Category III for depression. Given acute trauma caused by the treatment and the evidence for long-term memory and cognitive problems, it reflects poorly on the panel that the vote was so close.

Indeed. Despite the polarized response to the matter from proponents and opponents of giving ECT a pass, each side claiming history has proven their point, the fact of the matter is that the FDA is supposed to be ensuring our expectation of some level of safety. If an industry is unwilling or unable (or in this case both) to prove its product safe and effective given the established (and frankly, lax) channels, then that product has no business being passed off as a reasonable course of action in our nation’s hospitals. This shouldn’t have come off as a vote on ECT’s supposed merits but on its decades-long exemption from the system — and that shouldn’t be a close vote at all.

It’s a little early to cry victory as it remains to be seen whether the FDA will follow the panel’s recommendation, what result that will actually have and how much the overlapping psychiatric and shock industries will play off of the catatonia exemption.

If the diagnosis of catatonia is given this loophole, we will see more and more people diagnosed with this disorder…It’s similar to what happened to children: massively increasing the diagnosis of bipolar disorder to justify giving them adult mood stabilizers and antipsychotic drugs.

Unfortunately, the FDA is already waffling about whether or not it will in fact require the usual testing for Category III devices. In response to questions at the hearing, the agency staff said it was not certain whether a Category III designation for ECT would require the same rigorous testing routinely carried out for safety and efficacy. No one on the panel seemed to think the treatment should be phased out until safety and efficacy were proven.

Psychiatric reform moves ahead a step at a time, falters, and hopefully moves ahead again. The classification of ECT into Category III for most conditions, which at this point is only a recommendation, is a step forward and a somewhat positive sign to those of us who have called for this for decades. We hope the FDA will uphold its obligation to the public to thoroughly test such a dangerous device for safety and efficacy.

Since the psychiatric and shock industries have essentially shaken off the burden of responsibility for the safety of the consumer (certainly at the industry level the term is more fitting than patient) and the FDA is apparently questioning its convictions about the protection of the public, the burden rests on the people. As neither of those entities are wholeheartedly committed to moving forward of their own accord to ensure the safety and the efficacy of products on the market and ECT cannot prove itself under any honest scrutiny, the burden then falls on the people to pressure them toward forward momentum and to keep the scrutiny honest…but then, has there ever been a time when that wasn’t the case?

January 31, 2011 at 11:01 am 6 comments

It’s Just Like You’re One of Us (But With a Steel Strap and a GPS).

So this is what it’s come to? We’re willing to tag and track people based on a diagnosis? Oh that’s right, we’re not doing it to each other, only those sick ones we’ve so self assuredly separated out.

South London and Maudsley Hospital is trialling tracking of mental health patients. The tracker system involves fitting patients with a steel ankle strap linked to a GPS tracking system that can then monitor the location of the person.

As Gianna Kali of Beyond Meds wrote, “If you don’t automatically think ‘civil and human right violation’ there is something wrong with you.” I couldn’t agree more and would go so far as to say that you are part of the problem. There are two reasons these things happen — people in power are willing to disregard our rights and  the public is willing to allow it.

In response, a Department of Health spokesperson said;

‘This is a locally led initiative, not a national pilot.

“Patient rehabilitation into a community is an important part of recovery, but it relies on good risk assessment, trust between the patient and the service and patient responsibility. There can be no substitute for staff knowledge of patients to properly assess risk and to make the right decisions to ensure safety”.

Trust between the patient and the service? Is this what trust looks like — a steel strap with a tracking device? Maybe I’m reading this all wrong and they just mean the patient should trust the system. Personally, I have a problem trusting anyone with more power than regard for my interest. Similarly, rehabilitation only calls for patient responsibility. If it called for responsibility on the part of the system, we’d need a new one, rebuilt from the ground up.

What do you think this does for the idea of inclusion, by the way? I can’t imagine that a person wearing a device that advertises their private struggles and places them socially between a criminal and an animal to be studied is very well received in public situations. Perhaps we could forego the cost and complication of these devices and just go ahead with a ball and chain and scarlet letter…oh yeah, rights. We better keep it digital.

August 29, 2010 at 10:30 am

UN Official Calls Rotenberg’s Treatment ‘Torture’

Matthew Israel, founder (Photo by Larry Sultan)

Finally — someone in a position to do something is calling Judge Rotenberg Center’s discipline-by-electric-shock methods torture. You may remember a couple of previous posts (here and here) about JRC’s electrically shocking children, many with special needs, in addition to aggressive use of restraints, withholding food and just general abuse and bullying labeled care. These are not exceptions or anomalies but the very approach the school is built upon. They are using pain and fear to alter children’s behavior and they are doing so openly — even as a selling point — and sadly, there is a public buying. Parents that would almost certainly never take a job in an office that shocks them to keep up production and compliance are packing their kids up and dropping them off for this. Some  of these children have psychiatric diagnoses and behavioral  issues, others developmental disabilities including autism.

From the Patriot-Ledger:

A top United Nations official has described as torture the shock treatments used by the Judge Rotenberg Center on some of its special needs students. Manfred Nowak, the Austrian lawyer who is the U.N.’s special rapporteur on torture, in May asked the federal government to investigate the use of electric shocks at the school in Canton.

Earlier this year, the U.S. Justice Department opened an investigation into whether the center violates federal disability laws by disciplining and controlling students with electric shock therapy.

“I have no doubts about it,” replied Nowak when asked if the practice is torture in an interview broadcast on ABC-TV’s “Nightline” this week.

Nowak sought the investigation after reviewing a report critical of the center by Mental Disabilities Rights International, a human rights organization.

Thanks in part to ABC’s Nightline who featured JRC story (which I missed), A wider public is aware of what’s happening under our noses — and worse, that it’s been happening for decades. Is that enough? I would hope that we are collectively disturbed enough by what’s going on to insist upon an end to it but the public doesn’t get too bent out of shape  unless it’s their own pristinely “normal” children at the receiving end of the abuse. I would love to be wrong about that.

There is no question. This is torture. This is an abuse of human rights. The fact that it is done in a school setting or under the pretense of “therapy” or to troubled and troubling kids is irrelevant if not even more damning and it shouldn’t take 39 years, the network news and the UN’s special rapporteur on torture to tell us that.

•  •  •

You can contact Massachusetts governor, Deval Patrick HERE. Find out what he thinks, in the face of another election, of his governing over the only state in the nation to allow a facility like this to exist and thrive — and get the attention of the UN’s special rapporteur on torture. After all, people are shipping their kids up from other states with enough sense to ban such treatment. More importantly, tell him what you think of the torture of children and the disabled being carried out in Massachusetts. Demand change.


July 3, 2010 at 11:46 am

Should Transparency Take this Much Work?

Can a state’s Office of Protection and Advocacy do its job with only half of the information and the other half concealed to shield government agencies and state hospitals instead of  citizens?

From the Associated Press:

WASHINGTON — The Supreme Court says it will decide whether Virginia’s advocate for the mentally ill can force state officials to provide records relating to deaths and injuries at state mental health facilities.

I’m not sure why anyone would think there should be such a blind spot in an agency’s assessment of these facilities. Force implies resistance. Shouldn’t information like that be turned over upon request or even voluntarily recorded and addressed?

The justices agreed Monday to review a federal appeals court ruling dismissing the state advocate’s lawsuit against Virginia’s mental health commissioner and two other officials.

Backing the appeal, the Obama administration said the ruling by the 4th U.S. Circuit Court of Appeals in Richmond “threatens to undermine the enforcement of federal laws that Congress designed to protect especially vulnerable individuals from the abusive and neglectful practices that can result in injury and death.”

The Virginia advocate’s office, like those in the other 49 states, was created under two federal laws that give states federal money for monitoring the treatment of the mentally ill in state facilities. The first law grew out of public reports in the 1970s of crowded, filthy conditions and abusive treatment of mentally retarded children at the Willowbrook State School in New York.

The issue for the court is whether the Eleventh Amendment prohibits a state agency from going to federal court to sue officials of the same state. The state itself could not be sued in the same circumstances.

Argument will take place in the fall or winter.

The case is VOPA v. Reinhard, 09-529.

To read a brief summary of VOPA v. Reinhard II, click here (PDF).

Excerpt (emphasis mine):

The P&A system in Virginia is the Virginia Office for Protection and Advocacy (VOPA). In 2006, VOPA sought records relating to three incidents of deaths and injuries to residents of the Central Virginia Training Center (CVTC) and Central State Hospital (CSH) that occurred while these residents were in the custody of the Department of Mental Health, Mental Retardation, and Substance Abuse Services (DMHMRSAS) (now called the Department of Behavioral Health and Developmental Services).  When DMHMRSAS refused to provide the records, VOPA sought a declaration that this refusal violated federal law…

Additionally, the Fourth Circuit Court of Appeals is in conflict with a recent federal case decided by the U.S. Court of Appeals for the Seventh Circuit in Indiana, who noted that states cannot be allowed to shield their state hospitals and institutions from investigation and oversight — especially not the investigation and oversight created by Congress to fund some of the state’s most vulnerable citizens.

The Virginia decision has effectively rendered VOPA unable to fully exercise its federal authority to protect vulnerable citizens throughout the Commonwealth, even though Congress specifically created P&A systems for protection purposes.  Without access to the records from state-run facilities, VOPA has no way of completing an investigation—and without a complete investigation, VOPA has no way of protecting Virginians with disabilities from abuse and neglect.



June 22, 2010 at 11:33 am 1 comment

Australians Labeled Mentally Ill to be Held up to a Month Without Legal Review

How convenient it is to label someone mentally ill. You seldom have to worry about their rights. Whether legally supported or just socially allowed by way of a quiet acceptance (usually both), a label of mental illness separates you out to a lower and less free class. I know — it’s nothing I haven’t said before but until it changes, it’s not the kind of thing that goes without saying.

The Sydney Morning Herald reports that things could be changing for the worse for Australians deemed mentally ill. Again. Australia doesn’t exactly have a good track record in terms of protection and rights for people with perceived mental illness — and frankly anyone interested in preserving their rights to any kind of due process should be concerned.

Leading psychiatrists warn that the civil rights of mentally ill people could be severely eroded by plans to extend the length of time patients may be held in locked wards without legal review.

The NSW Mental Health Tribunal is poised to introduce a new system which will mean a patient can be detained for up to one month before their case is reviewed by a lawyer.

At present someone who is compulsorily detained for emergency psychiatric treatment is reviewed by a magistrate within a week or so of admission.

A week “or so” and now a month? Being locked in a hospital is no less a method of incarceration than being locked in a jail. If you’re allowing someone to sit behind a locked door for a month before determining whether there was any legal validity in doing so, the pretense of medicine and the presence of doctors don’t mean a thing. It’s the lock on the door that counts. This is a staggering blow to the idea of basic rights and liberties and aside from those obvious issues, a month of being held anywhere  against your will is going to seriously impact your well being, family stability, reputation and of course, your employment and finances. The world keeps going by outside while you’re locked up.

“The delay in independent review will mean that people with mental illness, and the public at large, will not be able to have the same degree of confidence that their rights will be protected in our psychiatric hospitals – and for no gain but a minimal dollar saving,” the doctors argue in a recent medical newsletter. “Abuses have occurred in the past … Reducing our vigilance can only increase the possibility of another Chelmsford or ward 10B type scandal”.

An associate professor of psychiatry at Sydney University, Anthony Harris, also opposes the changes, saying they are a cost-saving measure that will remove a ”quick way that a patient and their family can query the system”

There is no us and them. This is not just for the “mentally ill” to worry about. If anyone can have their rights stripped away by a label, then everyone should be wary of how easily that label could applied to them. History has taught us many things. Even the strictest of systems can be corrupted and abused, much less a system that leaves this much room for indiscretion and is so imbalanced as to disregard your rights from the start. It’s a crime that it happens and a shame how often we quietly allow it.

June 5, 2010 at 9:00 pm 2 comments

Kendra’s Law — Five More Years?

Kendra’s Law, a controversial New York state law enacted in 1999 under the Mental Hygiene Law, is due to sunset in June. If you hear about it from both sides enough, it’s easy to overcomplicate things and muddy the waters but what it really comes down to is that Kendra’s Law enables the state to drug people who they think might become criminals. Kendra’s law is in place solely to allow the forced treatment of people deemed mentally ill using fear of violence, however unfounded, as its leverage. It enables the state to strip people of their rights based on a diagnosis. Last I knew, the constitution (at least on paper) applied to all of us and not just those the state deems mentally qualified to share in the rights it’s meant to guarantee. That is a very scary path to be on and make no mistake — we are on it.

While its future is unclear, Kendra’s Law might very well be extended for another five years but not without a fight from a grassroots organization (no, not that one — a real grassroots organization) formed to protect the rights of people regarded as mentally ill — We The People. I, for one, hope they are able to help turn things around. They’ve been making their presence and stance as advocates for rights in mental health known and are taking part in meetings with Assemblyman Felix Ortiz in an effort to help restore the rights and dignity of New Yorkers.

From the Legislative Gazette:

Bill opponents, such as We The People, a group describing themselves as survivors of psychiatric atrocities in the mental health system, said this bill would extend the reach of the law to further encroach upon the civil rights of those from lower socioeconomic backgrounds unfairly labeled as “mentally ill.” Especially, they said, because it removes a provision that requires a physician to testify at the court hearing.

We The People want another woman to be remembered besides Kendra — Esmin Elizabeth Green, a mother of six who suffered from depression. She collapsed on the waiting room floor of the psychiatric ward in Kings County Hospital Center in June 2008. She died soon after, unattended and unnoticed by hospital staff.

This incident is just one example of the mistreatment of the mentally ill, law opponents say, because the assisted outpatient treatment system amounts to coercion, oppression and “torture.”

I’m not sure why the author felt the need to put torture in quotes. It reads like undue editorializing to me — as if to say it’s a stretch to call it torture. There’s a reason there’s a survivor movement and it’s not because the system has a healthy way of dishing out a healthy version of care. These drugs wreak havoc on your body, alter your mind and take you over in so many instances and in so many ways.Of course, once you become someone for whom force is considered an option, these things are just details, secondary to your being kept under control. Force does something sinister that rights and law can’t quite touch. Where you were once a person worthy of care, you become a problem to be solved.

Lauren Tenney, a coordinator of We The People, said, “They designed this [assisted outpatient treatment] to make it sound nicer. It was designed to fool the public to make people think it stops people from killing people, but they’re just getting drugs and no support. The research is entirely flawed.”

AOT should be referred to as IOC, she said, involuntary outpatient commitment.

She said the law is coercive and denies people their civil rights because it forces people into taking psychotropic drugs without their consent and does not provide the proper therapeutic support.

“I’ve seen people tortured and dead from their medication,” said Tenney.

If you have something to say, sign on to add your name and voice to the action We the People are taking. Contact Assemblyman Ortiz directly. Time is limited. Do you really want the kind of guy who wants to ban salt in restaurants making decisions regarding your mental health rights? Probably not, but that’s the situation. Don’t let it happen while you sit quietly. If you think you’re out of reach because you don’t live in NY, think again. Forced treatment laws are being introduced or strengthened all over. This is not just an issue of mental health rights but basic human rights and civil liberties. Drugging to prevent crime? That’s one step too far and a decade too long.

May 7, 2010 at 9:41 am 1 comment

MDRI Releases Report on Rotenberg Center

Mental Disability Rights International (MDRI) whose simple slogan is “Disability rights are human rights” has issued a report on the abuses at Judge Rotenberg Center calling on the Special Rapporteur, The Obama Administration and the Department of justice in their effort to put a stop to the establishment’s longstanding abuses against children and adults in their alleged “care”.

You may remember my posting about JRC in the past. The abuses that occur there are astounding and I and many others are left wondering how such abuses can carry on without any outside interference from the governing bodies that are supposed to protect all of our citizens — certainly those among us most vulnerable to mistreatment. In its report MDRI rightfully calls this mistreatment nothing short of torture.

From MDRI’s front page:

Washington, DC – April 29, 2010 – Mental Disability Rights International (MDRI) has found children and adults with disabilities tortured and abused at a “special needs” residential facility in Massachusetts and has filed an “urgent appeal” with the United Nations Special Rapporteur on Torture to demand the United States government end the torture immediately.
MDRI’s latest report, Torture not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (JRC),documents the use of electric shocks on the legs, arms, torsos and soles of feet of people with disabilities – for weeks, months and sometimes years. JRC uses punishments as treatment and US advocates have been trying for decades to close the school and end these practices. The school also uses 4-point restraint boards, tying children to the boards while simultaneously shocking them for hours; mock assaults; food deprivation; shock chairs; isolation and long-term restraint. Residents at JRC are diagnosed with a variety of behavioral, intellectual and psychiatric disabilities such as autism, bi-polar disorder and learning disabilities.
Laurie Ahern, President of MDRI and author of the report, states, “The cruelty perpetrated against children and adults at JRC is psychological and physical abuse, couched in the name of ‘treatment.’ The severe pain and suffering leveled against residents there violates the United Nations Convention against Torture. And to the best of our knowledge, JRC is the only facility of any kind in the US – and perhaps the world –that uses electricity combined with long-term restraint and other punishments to intentionally cause pain to children with behavioral challenges and calls it treatment.”
MDRI calls on the Special Rapporteur, along with the Obama Administration and the Department of Justice, to end the abuses against people with disabilities at JRC. MDRI is an international human rights and advocacy organization dedicated to the rights protection and full participation in society of people with disabilities worldwide. Help us put an end to the torture of children with disabilities in JRC.

I sincerely hope this report and urgent appeal are not falling on deaf ears. MDRI presents a clear opportunity for the system to take a stand on institutional abuse and torture under the pretense of care. We need to stop drawing lines across which we’re willing to allow these things to happen. No perceived mental illness or disability can be allowed to take away our basic human rights. This is their chance to show us that human rights are universal. If they can’t do that, what are they good for?

May 3, 2010 at 10:30 am 1 comment

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