The elephant in the NY State mental health system’s room.

At the invitation of Mr. Stephen Freeman, CEO of the YAI, I made a presentation at their YAI International Conference here in NYC on May 7. The topic I chose, of course, was what I call the ‘culture of abuse’ in the NY state mental health system. I thank Mr. Freeman for inviting our group to the conference. Personally, this was my first experience participating in an activity of this importance. It was a learning experience for me, and a pleasant one too.

What follows is the material I handed out (revised) in the presentation. It is also in word format in the ‘our documents’ tab on the top of the page.

THE CULTURE OF ABUSE 

INTRODUCTION

The Citywide Mental Health Project is a recently created New York City grassroots group of consumers of mental health services and their supporters. Our work is focused on:

a) stamping-out the culture of abuse and mistreatment that exists like a tattoo in the body of our state’s mental health system (MHS), and

b) Opening a public discussion about how this culture of abuse is enabled and legalized by the regulatory policies enacted by our state’s mental health agencies.

Why the focus on abuse and not on any other of the many problems in the system, like funding cuts?

1. Because, as we speak, the culture of abuse is inflicting, with impunity, horrific abuses, mistreatment and humiliation upon many of us, people with all types of disabilities, in some programs and residences where we go seeking mental health services, not abuse. People have actually been killed in the hands of callous providers of ‘mental health services’.

2. Because the mental health agencies have made it a taboo in our community the discussion of the problem of ‘institutionalized abuse’. This taboo denies credibility to the victims of these abuses and mistreatment who come forward to tell their experiences.

3. Because this public silence dis-empowers us, it denies us the right to self-advocate to protect our physical and mental integrity, our personal, civil and human rights, and literally for our lives. It still rings true what was said in the 1980s: “silence = death”.

Yes, services and funds are needed, but must we suffer harm and humiliation, or die in order to get them in the programs? Our community is doing an excellent work at addressing the other problems. The problem of the culture of abuse needs to become a priority too, exposed as part of a broken system that wants to hide the fact that it has killed people and continues to threaten our lives with its indifference to our pleas for fairness in treatment.

Are people with disabilities more vulnerable to abuses and mistreatment than other groups of people in our society?

Yes. Our own state legislature stated it clearly in the beginning of its new Protection of people with Special Needs Act passed last year:

“they are vulnerable because of their reliance on professional caregivers

 to help them overcome physical, cognitive and other challenges.”[1]

The Citywide Mental Health Project believes to eliminate this culture of abuse we need to start by breaking the taboo.

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[1] http://open.nysenate.gov/legislation/bill/s7749-2011 section 2.

Breaking the taboo: exposing the culture of abuse

Apart from The Citywide Mental Health Project speaking up about this, there is neither public conversation nor outrage in our community about the following outrageous facts:

Fact #1: For nearly ten years (2003-2012) the NY Times have been writing about abuses and corruption in our mental health system, culminating with their investigative series ‘Abused and Used’. Those abuses took place in both licensed and unlicensed facilities run for the state by both non-for-profit and for-profit providers. In other words, the abuses are embedded in the mental health system. We have found no reports or investigations by the NY state about those articles.

Fact #2:  In response to the articles, the Federal Commissioner of the Administration on Developmental Disabilities investigated and concluded in her December 2011 report[1] about the NY State’s protection and advocacy (P&A) system that:

• People with developmental disabilities (pdd) and their families were excluded from the state’s P&A board.
• That no efforts were made to reach out to them.
• That the state has failed to protect its pdd from abuse and mistreatment.
• That the state is in violation of the Developmental Disability Act.

Fact #3: The state agencies mandated to protect people with disabilities, ignored all those years theirs and their families pleas for help, even as the abuses were being made public. Yet, all agencies reported, and continue to report in their ‘evaluation’ of quality of services and other reports[2], that “90%” of consumers are ‘happy’ with services and with the “multiple layers of protection”[3], even in facilities where abuses are rampant.

Fact #4: State agencies like the Office of Mental Health (OMH) and the Department of Health (DOH)  appears frequently in court as co-defendant with abusive providers[4], or defending them.

Our governor confirmed indirectly that the culture of abuse has continued 40 years after Willowbrook by saying the following as he celebrated the creation (in response to the federal report) of the new NY State Protection of People with Special Needs Act:

“New Yorkers with disabilities and special needs for too long have not had the protections and justice they deserve.”[5]

Who else but the state and the state’s courts could have denied them that protection and justice to which they have a right?

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[1] http://www.nytimes.com/2012/01/11/nyregion/federal-government-criticizes-new-york-on-disabled-care.html

[2] http://bi.omh.ny.gov/cacs/index

[3] http://www.naswnyc.org/displaycommon.cfm?an=1&subarticlenbr=301 See OMH, page 1, last paragraph.

[4] http://thecitywidementalhealthproject.wordpress.com/2013/02/24/in-nys-no-private-right-of-to-sue-abusive-providers-under-the-nys-mh-law/

[5] http://www.governor.ny.gov/press/05072012-first-to-protect-special-needs

Explaining the taboo: money, but of course!

Taboo: a social custom that does not allow people to talk about matters that are considered embarrassing or offensive to others for fear of retaliation or punishment.

It is the state of NY who would be embarrassed if its citizens started to discuss publicly how it continues to abuse its people with disabilities years after Willowbrook.

Legally enabling abuse

The New York State’s constitution obligates the state to protect its people with disabilities, and the federal government also mandates it to do so as a condition to receive their funds. The state created its mental health agencies to carry out that obligation. But these agencies have failed miserably, decade after decade, to comply with their obligations.

In what could be considered a violation to the NYS mandate to license all providers of mental health services[1], the Office of Mental Health (OMH) have passed regulations to un-license (de-regulate) more than half of all the providers. It does it to relive the agency of its oversight and monitoring duties. OMH has also passed regulations reducing the providers’ accountability for their bad quality of services by legally eliminating the standards of care: from ‘high’, as mandated by the NYS mental health laws, to ‘minimum’ standards[2].

And here it is:

These agencies distribute the federal and state funds to all non-for-profit “care givers” as payment for their services. Who dares, at the risk of losing their funds or jobs, to speak up publicly to denounce these agencies as enablers of the abuse in which some callous providers engage, and sometimes as complicit with them? Mr. Jeffrey Monsour, for one, dares.[3]

“He was one of the people interviewed and featured in   a 2011 series of articles by The New York Times examining problems of abuse and corruption within the system.
Since then, the state has pursued a tenuous disciplinary case against Mr. Monsour, and it also tried to pressure the State Senate to disinvite him from a panel discussion. In an editorial last year, The Times Union of Albany criticized the state for its “muzzling” of Mr. Monsour. “

The taboo in our community to discuss the culture of abuse is the result of the fear of losing funds, jobs and prestige.

To be fair to many of our state legislators and some good judges in our courts, they cannot keep up trying to patch up the holes that these agencies continue to put in the intentions behind much good legislation. It is in the implementation by these agencies where the problems start.

[1] see on-omhs-unlicensed-policy http://thecitywidementalhealthproject.wordpress.com/our-documents/

[2] As above.

[3] http://www.nytimes.com/2011/08/22/nyregion/cuomo-administration-continues-to-pursue-case-against-jeffrey-monsour.html

Outcomes from the culture of abuse

“People with developmental disabilities [PDD] and their families were excluded from the state’s P&A board; no efforts were made to reach out to them.”Disempowerment through exclusion

Social exclusion is a process that leaves individuals or entire communities (like the disabilities community) systematically blocked from exercising their rights, from opportunities and from consistent access to resources. Healthcare, civic engagement, democratic participation and due process are considered ‘resources’. These are normally available to members of society and are the key to social integration.

For example, federal laws mandate that the board of the state’s protection and advocacy system be composed in its majority of people with disabilities and their families. This right gives these people the opportunity for ‘civic engagement’, to take part in the decision-making process about how the state is to protect them. But the state denied these people this opportunity when it purposely excluded them from the board, as we saw in the federal report, denying them the right to protect their interests.

The result of this exclusion from participating in our state’s mental health system is always disempowerment and alienation of the people with disabilities. Is the ADA and Olmstead still alive? If the answer is ‘yes’, then it seems as if the state has violated both. With the doors closed on them, the state escapes scrutiny and, as a domino effect, the whole system falls into lawlessness. But you don’t have to see it; it’s all behind the curtain of ‘lack of information’.

We, The Citywide Mental Health Project, believe that our ‘disabilities’ do not come from whatever illness we may have. They come from a mental health system that perpetuates with its own actions the stigma that people with physical or mental illnesses are inferior people who must be excluded from participation in the democratic process, denying them the right to protect their interests. This must change.

The opposite of ‘exclusion’ is ‘inclusion’: let’s get in!

The evidence that we are excluded from the system and its P&A is there. It shows that this exclusion is at the root of our two main problems: been abused and lack of voice in the system. We need to be included in order to change all of this. But included to do what and where?

We want to have a voice in the programs we attend so that we can protect ourselves from unprofessional practices passed as ‘quality of services’. We want to do the following in our programs through our Self-Advocates groups or Consumers Advisory Boards (CABs):

Policy-making in action

1. Give feedback about the quality of the services we are receiving from the program.

• To identify persistent problems we and our peers are experiencing in accessing the services, and to present solutions
• To identify what is working appropriately and to our satisfaction.
• To discuss how the goal of person-oriented services is working.
• To let the providers know how they are succeeding in achieving their stated mission and goals.

In organizing their own feedback process, the Self-Advocates will learn the real meaning of programmatic requirements such as “quality of services”, “compliance with regulations”, and other important terms.

2. Review an existing grievance procedure or develop one if none is in place in the program:

• A grievance procedure must be meaningful, capable of addressing and resolving our complaints in a timely fashion.
• It must guarantee that we can discuss problems about interactions with the staff or the administration without fears of being humiliated, ignored, or punish for coming forward with a complaint.

In reviewing the grievance procedures, the Self-Advocates will have the opportunity to learn important information about their rights and how to make them count.

All of the above describes exactly what ‘policy-making’ is all about. All of that and more is what the various laws invite us to do. The only barriers on the Self-Advocate’s path to learn to do this are: that people underestimate our capacity to learn how to be an active citizen, and that our mental health system does not want us to take part in this process. ‘Accountability’ is a term despised by the agencies and by some providers, but it is in our interest to learn to hold them up to it.

You CAN learn this and more. Your Self-Advocate group can prepare a plan to self-train each other on how to monitor and evaluate the services you receive. You will need to work with other groups and professional advocates who can help you prepare your self-training about policy and the feedback process.

Self-Advocates learn and keep updated by sharing information in their group, and at their own pace. But learn they do!

On the Boston-Bomber madness.

It feels safe to post a comment now.

Until that young man was captured, it seemed as if the USA and the people of Boston in particular were in a COLLECTIVE state of terror over capturing ONE supposedly armed adolescent man. It seemed as if all sense of proportion was thrown out the window in the name of ‘safety”.

It is not safe to express differing opinions when people are in panic. Hopefully I can express them now. These are my personal opinions.

When the state puts it citizens in a collective mental state of fear, all REASONABLE alternatives are thrown out of the window and brute show of force is justified as the only alternative to dangerous situations. Example:

1. There was NO NEED to declare a NO-FLY ZONE over Boston. All it achieved was creating an unnecessary collective state of FEAR. No-fly zones are for nations at war, it shouldn’t be used for locking up civilians in their states. No one declared a war here. There were no planes used as bomb,  only a pressure cooker was used to cause harm. We need to get a grip next time or soon we will escalate our ‘protection’ measures to using  DRONES to drop bombs to capture some war terrorist. We’ll consent and get used to that too.

When ‘hoodlooms’ go on a shooting spree, the state does not declare a no-fly zone. Why here?

2. There was no need to declare a ‘state of siege’, better know as a ‘lock up’. Personally, I felt more horrified of seeing the police state, a ‘martial law’ in all its regalia, than afraid of the fugitive.

Boston looked more like our image of Cuba, or even as Iraq with the military going door by door yelling at people to stay inside. What would the military have done to a civilian who refused to get inside? After all, martial law was not declared. Think about it.

THE DEFLATING ENDING

At the end, as to show to you that all that SHOW OF POWER was unnecessary, the fugitive was eye-balled by a citizen released  from house arrest…er…from the lock up. Had he not been at home hiding from the adolescent, he would have probably ID the fugitive earlier and prevent all the WASTE OF MONEY the state and the FEDS engaged in to show to you that the military and police state are needed to save you from rudimentary bombs.

And even AFTER the citizen was SOOO CLOSE to the fugitive, saw that the kid was bleeding and EVIDENTLY couldn’t move  (for otherwise the kid would have FLED), and that he was not attacked or blown away by a bomb, the police state couldn’t control itself to capture the kid without a show of OVER POWERING force.

The big armed military didn’t DARE to get as close as that CITIZEN did to the adolescent. The fugitive didn’t ATTACK the citizen, why all that show of force? I doubt they will be able to extract any information from the ‘bomber’ in the condition in which they left him after shooting him at the boat.

Yesterday we saw Boston falling into a totalitarian state with the consent of a collectively terrorized citizenry, all over ONE young man. And the people didn’t see it. They were too busy being afraid. No time to question all that information we were given about who these guys were or why the need to militarize our nation to get them.

The Russians had announced, supposedly, to the FBI that these young men were ‘dangerous’. In the USA we prefer to not heed these warnings, we prefer the drama of chasing them after the damage has been done. Hey, there are MILLIONS AND MILLIONS of dollars to be made by subjecting you to a collective state of fear.

Whoever set that bomb in Boston needs to be brought to justice. And the chase to capture the fugitives was necessary to prevent them from blowing up other targets.

Blowing up the Constitution and militarizing Boston to capture these guys, that was NOT necessary.

On Failed gun-control laws and ‘ROBBANRA’: it could have been worse.

Look people, you should appreciate and thank our sold-out ‘law makers’ for NOT passing the law.

First, it should be clear by now that the description ‘law makers‘ applied to our Congress is an anachronism. Keep up with the times, people! Congress should be known as ‘ROBBANRA‘, the Congressional ROBBANRA. Yeap, that’s more like it.

And…what was that? What is ROBBANRA?. Oh, I forgot to ‘splain’. It means the ‘Rubber-stampers of bankers, billionaires and the NRA’.

As I was saying, be thankful. Congress could had, after all, PASSED a  bill more appropriately named THE BILL OF LIES ABOUT GUN-CONTROL. Like our NY State Gun Control Law.

It would have been filled, like ours, with, not only loopholes, but with concessions and fictional ‘mandates’. And with provisions to control YOU, mental health consumers, or even users of the banking industry instead of the gun industry because, as we know, many bills passed by ROBBANRA (and many states also) are an opportunity to slide-in controls on issues un-related to the bill been discussed.

Like ours here in NY, where the gun bill was used to amend the Assisted Out Patient Treatment (AOT) law, extending the time a person can be held involuntarily and giving psychiatrists and RN nurses (for they now can commit people without approval of a psychiatrist) the power to guess when a person will flip and then commit him or her. AOT was not part of the gun-control discussion.

But that was not the only misrepresentation of the bill.

BIG ‘NY STATE GUN CONTROL BILL’ LIE

Our Congress could have passed a law with all the goodies for the NRA and then tell you that YOU WON. Like in NY State, because one thing is what they TELL you, another is what the new law says.

In NY State,  people were told that the new gun law mandates gun sellers to do background checks before selling guns. A LIE.

The bill’s Art 39, Section 898, sub 2  it clearly says that doing a criminal background check  is a CHOICE, not a mandate for the seller :

2. Before any sale, exchange or disposal pursuant to this article, a national instant criminal background check must be completed by a dealer WHO CONSENTS TO CONDUCT SUCH A CHECK, (caps by me)

I couldn’t find other ways to highlight that qualifier. That’s the masterful art of writing laws: use ‘must’ to give the impression that a mandate was stated, but then add the loophole ‘consent’ which is actually the only thing that matters in that line. ‘If you CONSENT to do it, you MUST do it right’ or else don’t do it.

I have to laugh.

You see. By Congress not passing the gun control bill, you were spared lies, fictional mandates and loopholes…but then, you would have go on living happily thinking that something positive was done.

Oh, well. Don’t worry, our Congressional ROBBANRA will give you more peace of mind with bills like the Homeland Security Law.

Gov. Cuomo’s new Protection and Advocacy System: Do we REALLY need to be protected??

I asked myself that question while I was at the state-wide video hearing last Friday about the Gov Cuomo’s proposal to create a  new P&A system. From the Metro area,  The Citywide Mental Health Project were the only ones there. More than shocked or upset, I was saddened by the lack of interest in our community and the public at large on the issue of abuses perpetrated on people with disabilities.

You would have thought that, after all the brouhaha about abuses and the gun control laws that promise to curtail the few rights we have left, after all those state reports about privatizing the functions of our government, which will make abuses a mere ‘collateral damage’ that comes with the imperative to make profit, you would have thought that after all that there would be a long line to get inside the conference room. Nope.

The situation I described was the same in other state counties: few brave souls showed up to speak up their minds. Many were able to articulate their lack of hope in the ability and willingness of this new system to protect people with disabilities. DIA was there, in another county; some people with developmental disabilities stood up to speak up  for themselves. The father of a son who was killed in one of this institutions was there. I wish I could speak to him; his comment was stripped of pleasantries and went to the root of the matter. His statements were very much what we at the Citywide have been saying about how the system is failing us.

Where is our community? It seems that our community and the society at large trust that the Governor, because he is a democrat, is doing everything right to help us.

Anyone who knows about politics knows that ‘trust’ in politicians is like trusting ice will keep your water cool for a long time. (Think about simile.)

Even if I grant good-will in the intentions behind this new P&A system, politicians make (GULP) mistakes. And one thing is the INTENTION behind the policy, another is the IMPLEMENTATION.

We are still here, the Citywide, trying to keep the issue in the open. The discussion of abuses is TABOO in our mental health system; we need to break that taboo.

Waiting for a miracle will not change things. We need to stand up and start speaking about this issue.

And if you are happy and have not experience abuses and mistreatment then, let those who have and want to denounce the abuses in the system do their work.

We can’t continue to cry ‘foul’ every time some story of abuse is published in our mainstream media and then go back to our state’s  ‘councils’ where nothing is done about anything without the consent of OMH or the city.

Organizing to secure funds for programs is a priority, but so is our lives and mental health.

We need to organize to make the system SAFE for us. It will not happen by magic.

Lourdes

the Protection and Advocacy redesignation public hearings: our testimony

What follows is the statement I read yesterday at the state’s video-conference  on the proposed re-designation of the P&A system.

Our group were the only ones there speaking up for our community and representing the metro area.

This my  first experience for I have never been to these ‘video-conferences’ given that I’m ‘new’ to doing activism within the mental health system. It was quite an experience.

For one, we were amazed at the third-world level of the system! WOW. I’m sure in Nicaragua there would have been less problems in televising the thing. You could not see the people making the presentations, the audio went on and off…disgraceful. The workers tried the best they could with the equipment they get from yard-sales and the extra slow internet speed we have in the US, as compared to Europe’s.

As for the statements:

Look, our community is AWARE that the government IS part of the problem when it comes to abuses. Consumers from other areas of the state made direct comments about that.

Personally, I got from the conference that consumers don’t have  much hope in that the new P&A system will make a difference in protecting us. GOOD! Now we take the BULL BY THE HORNS.

I’m inviting anyone reading this in our community (consumers) to attend our group’s meeting on Friday April 26 to help us plan a meeting to call for the creation of a coalition to deal exclusively with the problem of physical and psychological abuses of consumers in the NY mental health system.

Please, read the testimony I presented yesterday at the video conference. Comments are more than welcome. There’s Word doc copy at the Our Documents tab.

Testimony of The Citywide Mental Health Project at thePublic Hearing on the proposed redesignation of the New York Protection and Advocacy(P&A) System and Client Assistance Program (CAP) for people with disabilities.

April 9, 2013.

Every 10-15 years, since Willowbrook, a new form of P&A is created as a result of reports about how the state ignores or is part of the culture of abuse of people with all types of disabilities in its system.

Today’s P&A ‘redesignation’, and the new Justice Center, is the continuation in the new millennium of this 10-15 years pattern.

It is the response, not to consumers’ denunciations, but to the Federal ADM of Developmental Disability’ scorching 2011 report based on the NY Times investigation of abuses in the state’s mental health system.

It concluded that the state’s CQCA[Commission on Quality of Care and Advocacy]  had failed (to put it mildly) to protect the disabled, that consumers were excluded from its P&A board, and that the commission had violated the DD Act [Developmental Disability Act]. The system was part of the problem, it had to be torn down and rebuild once again.

And yet, these mental health agencies always report that over 90% of consumers rate quality of care as excellent, even people in places where reports of abuses are rampant. That’s because it is taboo to discuss abuses in our system.

As a response to the report, Section 2 of the Protection of people with special needs Act repealed Art 45 CQCAPD. But it designated these same agencies and the JC as official oversight agencies keeping the same licensed and unlicensed rules that give legal cover to abusive providers, and leaving us still mute in the system.

And this notice of redesignation does not acknowledge nor mentions how the new P&A will correct the violations relating to the exclusion of consumers from the board, which led to the redesignation in the first place.

The definition of insanity is doing the same old things and expecting different results.

As long as the system continues to deny us a voice, as long as there is no official mechanism for us to bring from the programs in which we are up to the agencies our reports of quality of services, as long as token consumer councils continue rubber- stamping policies giving the impression that our community consent to them while we are actually been left out, this redesignation and the JC will continue the culture of ignoring our cries for help.

The Citywide Mental Health Project is calling on our peers to form a coalition of consumers to deal exclusively with this issue of abuses, which moved to our community when state’s institutions were forced to close, so that we can be heard loud and clear about the meaningful policies we want to see enacted.

We cannot continue hoping that good willed professionals will change this system, and wait for the next round of 10-15 years pattern of reports about abuses in the NY Times.

Thank you.

Lourdes Cintron

Founder of The Citywide Mental Health Project

(718)561-8415

Email: citywidementalhealthproject@live.com

Address: 480 East 188^th St. Apt. 7M

Bronx, NY 10458

Women alert: HRT trials and common sense doesn’t mix.

Study upholds breast cancer mortality for hormone replacement – The Washington Post.

Hormone-therapy is produced by men, uhm, ‘pharma men’. Is one of those things determined by sex, apparently. Of course these pharma-men are going to say that  hormone replacement therapy (HRT) is good for you despite all the reports of women dying from it.

HUNDREDS of thousands of desperate women have participated in clinical trials ( not only the 100k reported in the article) designed  to corroborate whether HRT truly causes breast cancer. The answer is always YES, whether more or less ‘aggressive’ or whether you die or not from it, the answer seems to invariably be yes.

Clinical trials ought to be placed in the list of cancer-producing behavior, like smoking cigarettes.

I’m waiting for our own  NYC mayor Bloomberg to stand up against clinical trials, you know, to infringe on our freedom for our own good.

Nah. He has no breasts.

A falla representing the PIP breast implant scandal. Pic from Fallas Festival in Valencia, Spain. It’s worth the visit to that blog.
http://trip.worldtravellist.com/2012/03/fiery-finale-to-the-fallas-festival-in-valencia-spain/

Gov. Cuomo’s ‘Intent to redesignate the Protection and Advocacy Systems’ proposal

For those of you interested on this, there’s a copy of the proposal on  ‘Our documents’ tab up there for you to download.

The Citywide Mental Health Project will, hopefully, make a testimony on this proposal on April 9.

Happy readings.  (smile)