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
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.”
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 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, that “90%” of consumers are ‘happy’ with services and with the “multiple layers of protection”, 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, 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.”
Who else but the state and the state’s courts could have denied them that protection and justice to which they have a right?
 http://www.naswnyc.org/displaycommon.cfm?an=1&subarticlenbr=301 See OMH, page 1, last paragraph.
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, 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.
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.
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.
 As above.
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!