Tag Archives: culture of abuse

The DSM-5: The Book of Lamentations


The Book of Lamentations, by Sam Kriss at The New Inquiry, is an imaginative analysis of the psychiatrists’ bible, the DSMx (Diagnostics and Statistical Manual of Mental Disorders), criticizing it as ‘a failed dystopian novel’. The most enjoyable analysis of psychiatry I have read in a long while: insightful, well-informed and funny.

Vincent van Gogh Corridor in the Asylum (1889)

To me, that ‘diagnostics’ book is nothing but a “manual” for becoming rich by creating  lab-rats for the pharma, the for-profit prison system and the psychiatric system that feed on these victims. The DSM might as well be on the Forbes  list of top ten best-selling books on ‘how to make yourself rich fast by sticking labels to other human beings’.

Below is an excerpt of the essay. (My thanks to Doris for the link.)

“It’s also not exactly a conventional novel. Its full title is an unwieldy mouthful: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. The author (or authors) writes under the ungainly nom de plume of The American Psychiatric Association – although a list of enjoyably silly pseudonyms is provided inside (including Maritza Rubio-Stipec, Dan Blazer, and the superbly alliterative Susan Swedo). The thing itself is on the cumbersome side. Over two inches thick and with a thousand pages, it’s unlikely to find its way to many beaches. Not that this should deter anyone; within is a brilliantly realized satire, at turns luridly absurd, chillingly perceptive, and profoundly disturbing.”

 

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


elephant

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.

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?


[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 https://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!

Re: NYS Law 7400 creating the Justice Center for the Protection of People with Special Needs#3


s 553. powers and duties of the justice center. the justice center shall have the following powers and duties:
(d) consistent with appropriate collective bargaining agreements,
conducting all hearings and other proceedings relating to discipline of employees found to have committed abuse or neglect (for state entities bound by collective bargaining, the disciplinary process established through collective bargaining shall govern);

What this is saying is that, despite all of those hundreds of pages of new law to supposedly prosecute abusive workers, the unions determine how to deal with the perpetrator. It says so clearly: “IT SHALL GOVERN”, collective bargaining rules!

Now, if I were a unionized worker, I would want that in there. Honestly speaking, that’s their right, to protect each other, to have that union protect them. The government is not going to protect them, that’s why workers pay the union, for protection. I have no problem with that.

My problem is that NO ONE WAS REPRESENTING US CONSUMERS, the ones for whom this bureaucracy was being enacted, there. This was all done between politicians and the unions.

That’s why I keep insisting in that the ONLY mechanism mental health consumers have to protect themselves are the CONSUMER ADVISORY BOARDS in each program, if they can make it work for them. That’s what the Citywide Mental Health Project is trying to do: train ourselves to use the CABs for what it was meant to be.

Our power is in our number. The good intentioned lawyers who have represented us in court can’t protect us. We lost almost every case in court for the protection of people been abused, lost in appeals.

Maybe we need our own ‘union’.

Re: NYS Law 7400 creating the Justice Center for the Protection of People with Special Needs#2


More from the 7400 bill

(b) the special prosecutor is empowered to apply for search warrants pursuant to article six hundred ninety of the criminal procedure law, ….however that the failure to give notice of a search warrant application to a district attorney shall not be a ground to suppress the evidence seized in executing the warrant.

That’s too much power. That’s basically a ‘we can enter your home any time we want’. Whatever they find there can be used against YOU. Too much power.


Re: NYS Law 7400 creating the Justice Center for the Protection of People with Special Needs


Those people who, like me, have had the misfortune of  having to represent themselves without a lawyer (pro se) in court, can tell by scanning through the new NYS bill purporting to ‘protect’ the “people with special needs” that it is simply more bureaucracy on top of old bureaucracy. Actually, the new bill makes it MORE DIFFICULT for these “people with special needs” to protect themselves. This NYS senate bill 7400 is basically a bill of rights FOR THE PERPETRATOR.

Again, I’m not a lawyer or anything of the sort, I’m simply expressing my opinions. But don’t take them as correct;  go ahead, read the new law! That’s a challenge, my friends, literally. It’s a challenge because the bill will challenge your ulcers, so to speak.
THE MOTHER OF ALL LOOPHOLES

Loopholes are the bread and butter of those who lobby our politicians. Lobbyists either draft the bills they want for their professional gains and give them to our lawmakers to sign, or lobby to draft loopholes in the bill if it is being created to control them. Well, you tell me if this is not like the mother-of-all-loopholes:

there shall be no monetary liability on the part of, and no cause of action for damages shall arise against, any person on account of participating in good faith and with reasonable care in the communication of information in the possession of such person to an incident management committee, or on account of any recommendation or evaluation regarding the conduct or practices of any agent of a facility or provider agency.

The first loophole is in these words: good faith and reasonable care. Do you have any idea of how DIFFICULT it is for advocates (forget for the pro se!) to prove that a perpetrator, in any situation, but more so in mental health systems, acted NOT with good faith  and such perpetrator was ‘unreasonable’ in his/her professional behavior? The opposite of the legal concepts of good faith and reasonable care are ‘malice‘ and ”negligence‘. Well, good luck in trying to prove that a provider’s actions of ignoring an ongoing abuse in his/her facility was nothing but ‘unreasonable care’.

According to this bill, to convince the judge to accept to take a look at your complain, you first must PROVE to the judge that the provider was reckless and negligent. Otherwise, the case will be thrown out because this law states that you have NO CAUSE OF ACTION against a provider whose ‘errors’ are expected as part of the risks of the profession. In other words, instead of having a case to prove that there was negligence, you must prove that there was negligence to have the case heard in the first place.

The second loophole is in the fact that if the provider ‘misinforms’ the ‘investigating committee’ you have to prove that it was intentional. In other words, this bill tells you that from the outset you have no cause of action for damages, and that it is YOUR duty to prove that the information that should have been in a report but isn’t (or was misleading), was intentionally unreported.

I understand that people should be ‘innocent until proven guilty’, but the problem with this bill is that it TAKES AWAY YOUR RIGHT TO TRY TO PROVE YOUR CASE. You are simply being barred from court. Before this law, you could go and try to prove that there was negligence. Now you have to prove that you have a right to try to prove that you have a case. And the parts about ‘no cause of action for damages’ and ‘no monetary liability’ guarantees that hardly any private lawyer will take your case even if s/he can prove real damages.

Yeap, the new bill is protecting someone who is not you. Guess whom it is protecting?

Outline of the origins of the mental health Consumer Advisory Board


This is how I understand the historical development of the consumer advisory board (CAB):

Two events mark the origin and background of CAB:
a) the beginnings of our Federal public mental health policy system (‘mhp’ from here on) and
b) the Willowbrook Consent Decree.

Part I:
A: Beginnings of Federal Public Mental Health Policy System
1) No FEDERAL mental health policy existed before the 1960s because:
a) States controlled mental health services up to that time and
1.  their focus was on funding psych hospitals as the only place for treating the mentally ill.
2. support was for the  psychiatric profession only.
b) because Americans distrusted the federal gov dictating the states what to do. Sounds familiar?

2)  Pres. Kennedy credited with initiating the Fed mental health policy system.
a) started with address to Congress Feb 5, 1963.
b) the process he used was typical of the policy making
process: he ordered a study/research about the situation of the mentally ill in the nation, created a committee to advice him on solution, and presented to Congress his decision on how to try to solve the problem.
c) his focus was on:
1- De-institutionalization of psychiatric in-patients
2- moving them and services for them to the community
3- Prevention
4- assigning funds for those services. By assigning funds, he committed the government to his plan to solving the problem of mental illness.

That same year (1963) Congress passed his Community Mental Health Act: In that way started the federal public mental health policy.

3) His policy consisted in:
a) offering money to the states to participate in his policy, but the money came with a catch:
b) in exchange for the money, States must create an Advisory Council that would:
1. advice the states on what services the mentally ill needed and
2. include protection and advocacy as part of services.
3. be composed of, among others, consumer reps. This is the first federally mandated state mental health advisory council.

In this way WE got into the newly formed Fed mental health policy system.

4) Nine years later came the Willowbrook court case (1972). The
Consent Decree (agreement) stated:
1. This Board [CAB] shall participate in the development of Willowbrook’s philosophy, goals and long term plans, advice the director on a regular basis…”
2. Membership shall include…residents or former residents.”

This CAB was not a mandate to other institutions but served as a model to our nation’s efforts to recover from the haunting history of state-run houses of horror for the mentally ill.

Summary:
These two events (fed mental health policy and Willowbrook) show how:
a) WE were called to participate at both levels of the nation’s new public mental health policy system: at the state and at the facility (program) levels.
b) the background behind the push to create CAB was:
1. Abuses at state’s facilities (policy of states’ ignoring the abuses).
2. Creation of fed mhp as a response to those abuses.
3. A recognition (implied in the laws) that without PARTICIPATION, the mentally ill were doomed to be oppressed by the same mental health institutions/facilities created to serve them.

This new federal policy and CAB were created for US, NOT for the PROVIDERS. There is no language there referring to CAB as an ‘ancillary’ organism in the policy system; CAB is an INTEGRAL PART of our mental health policy because it was meant to be used by us to coordinate with the providers the program’s policies to prevent abuses of power by providers (private and government).

Part II: THE PROMISE CONTINUED
This promise of participation of the mentally ill in the mental health system continued with almost the same language, with all the other Congressional acts that followed Kennedy’s and Willowbrook. For example:

1- McKinney Act: [July 22, 1987]

-Section 11386: “BY REGULATION each provider must provide PARTICIPATION  of…homeless or former homeless…INCLUDING on the BOARD OF DIRECTORS or other EQUIVALENT POLICY MAKING entity of the  PROVIDER…[no money to the provider] “unless provider agrees – to involve the individuals and families THROUGH  employment or volunteer services in the CONSTRUCTING,          MAINTAINING and OPERATING THE PROJECT.”

[How many of you have participated in the “constructing or operating” of your supported housing?]

2- OMH Supported Housing Guidelines (Appendix Goal 4) says that providers must provide us with “formal input into program and policy decisions”.

Thus, de-institutionalization brought the services to the community and we were promised a place at the TABLE! a VOICE in the system to be heard and to make decisions on matters that affects us.

We have even being given the MECHANISM to do that:
a) the state advisory council
b) and the CAB!! But not allowed to use it as intended.

Instead:
– Willowbrook’s CAB turned into end-of-life decision-making
body for these people. NY State passed this bill:

“authorize the CAB to make end-of-life decisions… [for people] who lack the capacity to make their own health care decisions.” NYS-S3169 Feb 10, 2011

That bill shows how important and the extent to which CAB can be used: Consumers together making important decisions. [We wouldn’t use it to make “end-of-life decisions”, though. We don’t need death panels.] But this mechanism is being hidden from us, maybe because it is too powerful a tool to leave in the hands of the ‘loony’? We can ‘decide’ euthanasia for someone else but not how to devise a grievance procedure for us in our programs?

Part III: Policy systems

Definition of POLICY:
1. An informed CHOICE
a) in response to some problem in the agenda of government or organization.
b) includes all DECISIONS /NON-DECISIONS to do something
about the problem: it‘s a conscious decision. As when the federal and state governments chose to do nothing at the beginning of the AIDS crisis, or how states did nothing to protect those being tortured in psychiatric hospitals up to Willowbrook and even today are examples of policy: doing nothing or policy of inaction.

2. The IMPACTS of those decisions are part of the study of the policy intentions; they are FEEDBACK! Always part of policy analysis because of:
a) POTENTIAL FOR INFRINGEMENT OF INDIVIDUAL’S RIGHTS by the policy enacted.
b) CAB are part of that feedback to the policy system’s process. THAT’S WHY WE MUST PARTICIPATE on them.

Part IV: The CORE FUNCTIONS OF PUBLIC POLICY

There are three: Assess, policy development, and assurance. These functions will be used by the City-wide Mental Health Project to assess how CAB in our programs are fulfilling the purpose for which they were created.

Not all of the essential services under each function will be used because we do not have the capacity at this time.

A: Assessments
1. Establish goals to solve problems we identified in prog.
2. Test those solutions
3. Assess the impact
4. Use the results

B: Policy development
5. Inform, educate & EMPOWER our people about the
problems we confront in the program.
6. Mobilize our community/create partnership with
others
7. Develop/plan intervention strategies and support
for our efforts.

C: Assurance
8. Enforce laws and regulations
9. Link people to services needed/GOVERNMENT
10. Evaluate the effect, accessibility and quality of services.
11. INNOVATIVE SOLUTIONS.

This outline and plans to empower our CAB will be reviewed and further developed through out this month.