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)
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)
Below is the statement I read at the NY City Council. I would say that the audience had a good response to this, most of them. There were some ‘uuuh’ at the part about the ASPCA, and a lot of laughter (intended) when I mentioned Dr. Evil at the end. The purpose of this presentation was actually to have the providers and their representatives there hear us and our message. I think they did.
Testimony presented by Lourdes Cintron for the Citywide Mental Health Project
At a Public Hearing on Thursday, March 21, 2013
14th Floor Committee Room
Presented to: New York City Council Mental Health Committee
Good afternoon. My name is Lourdes Cintron, the founder of The Citywide Mental Health Project, still a grassroots group of consumers of mental health services and their friends and relatives opening to public discussions the roots of our lack of voice in our mental health system and ideas on how to regain our voices in that system.
We, consumers, are grateful to you for trying to prevent more cuts in funding for programs, and to the highly professional service providers represented by these people here today for their efforts to keep these programs open.
But, after the money is allocated and everybody disperses to focus on the next threat to programs in the agenda, who keeps an eye on how are these funds been used in the programs?
Let’s be realistic: There is no meaningful follow up on accountability and what quality of services that money is buying. The CABs, [Consumer Advisory Board] the tool in place for us to partner with providers at the point of service to design policies that will deliver services effectively and without causing harm to us, are virtually nonexistent.
Unwittingly you continue to fund some providers who shouldn’t be in the business of social work, and your funds pay the salaries of some unprofessional directors and supervisors whom the ASPCA wouldn’t hire to service their dogs.
According to the SAGE report, the State spends 16 BILLIONS in contracts with NFP [not-for-profit] but there are few, and meaningless at that, CABs in those programs and no meaningful grievance procedures.
Instead we are given councils and advisory boards created by OMH and the DOHMH where we are forbidden to talk about the ‘A’ word: abuses.
They decide the agendas and do all the work; we just have to show up. So what happens when they decide to take the resources and change the structures of these boards?
The best illustration of the institutionalized mentality of disrespect and disempowerment of consumers is the so-called NYC “Federation” of Mental Health Consumer Advisory Board. I know because I was there and had to leave immediately to protect what is left of my sanity.
As you all know, the commissioner, without notifying or consulting the consumers who are there to ‘advice’ him, expelled the providers out from the old federation, kept the consumers because – well, you just can’t have a federally mandated consumer board without consumers – removed the resources from the MHC [Mental Health Committee] in the 5 boros [boroughs] and left the consumers with a shell of a ‘council’. He simply left us without a voice in the system.
That’s how OMH and the city have trained consumers to be helpless and disempowered.
In view of all these problems and realities, we are asking you to, as Dr. Evil said in Austin Powers, “throw me a freaking bone here”
We need MEANINGFUL CABs at the point of service, organized by consumers themselves to collect and bring to you our feedback about how the services you are paying for are been delivered.
That’s what the Citywide Mental Health Project is trying to do.
The least you can do for us is to help us organize a Town Hall meeting to listen to what the consumers at the point of service have to say about how they are receiving the services.
Maybe from there we can come up with more creative ideas to protect us other than building a whole bureaucratic structure around one phone call to report abuses.
Yesterday’s MAC-OMH Town Hall meeting on licensed and unlicensed housing can be described as interesting, intense and illuminating: everything in it.
No other than Mrs. Moira Tashjian, OMH Director of Housing Development and Support came down from Albany to answer…er…field questions would be a more appropriate description, about that topic.
The attendance was a bit below expected, probably due to the freezing cold. By the way, there’s a flu going around. At least three people I know have come down with it and were unable to attend the meeting. I call that flu the “sequester threat”. They may be related, after all.
Back to the reporting. Mrs. Tashjian was open and honest in answering the tough questions from the audience; when she did not know the answer to a question, she would say so and not try to evade the situation. At least that’s how I saw it. She also promised to corroborate information and bring it back to us.
The meeting was interesting because of the different points of views on the topic. The issue of licensing was discussed by Mrs. Tashjian from the perspective of services and funding, the audience was more focused on protections and accountability of providers.
It was intense because, well, that’s what happens when ‘the meeting of the minds’ is incomplete. More on that later.
And the meeting was illuminating because it showed what was known and unknown by both the audience and the director of housing about the issue, the conflicting understanding (among everybody) about it, the levels of cooperation that can be achieved between her department and the consumers in the audience, and the steely resolve of the consumers-advocates in pursuing answers and clarity on the issue.
I’ll talk about the final outcome of the meeting at the end of this post. I want to focus now on the problem of reaching an understanding between administrators and the consumers.
‘Why would you want that?’
The question posed by Mrs. Tashjian at some point in the middle of the discussion that sticks the most in my mind is “why would you [the audience] want licensed housing?” She explained that licensed housing is the type where more restrictions are imposed on the resident because, as far as I understood her, it is for consumers still in lower levels of functioning (she didn’t use those words, I just did). I think that is where ‘the meeting of the minds’ broke, at least for me. I think that the question itself shows where the disconnect is.
First, most of us there don’t understand ‘licensed’ housing in the way she described it. For us, the issue is regulation and accountability of providers. She saw the issue as one of what services are provided in one or the other. While some people came looking for information about that, the majority of us went there to find information about the legal distinctions between licensed and unlicensed housing and programs.
That’s the issue Mrs. Tashjian had the most difficulty understanding, that we were not looking for services but to find out what protections each one affords. She was able to address everything else efficiently except that, at least in my view. We are not always looking for services, sometimes we want to know where to go when the service is being denied.
She was pressed to address the issue and pointed at the field offices to go for complaints and the grievance procedures that must be in place in the programs. That’s one of the problems with the unlicensed issue: we are not informed of options, providers are not held accountable for blocking access and, as Mrs. Tashjian said, their field office is made of only two staff members to cover thousands of residents. Come on!
‘He who has an ear…’
I don’t doubt Mrs. Tashjian commitment to helping us and her interest in listening and understanding what our concerns are. Yet, there is a disconnect between what the ‘system’ thinks we need and what we actually need, and it blocks the ability of administrators and providers to listen to us.
Despite all the words about ‘personalized treatment’ and all the committees and consumers’ councils to ‘listen’ to us, the mentality in the mental health system still is that we are this ‘needy’ people that don’t know any better, and ungrateful at that too because we don’t appreciate all that is ‘given’ to us. It’s not a ‘conscious’ believe; it’s like everything in a culture: ingrained and unquestioned, until that believe is shaken. It’s always painful to have our culture questioned. Usually, something good comes out of the questioning.
This is what I would like them to hear:
First, we are grateful and appreciate the services and the work of those providers who can rightfully be proud of their professional interventions. But don’t forget: we also fought for those services we now have and are a source of job for so many.
Second, we do ‘know better’. We know that the system is ‘broken’ (as stated in the MRT report) because we experience it. Some people pay with their lives or that of others for the ‘benefit’ of getting supported housing because, once they get in, they get abused by unprofessional providers to the point of breaking, or neglected to the point of abject hopelessness.
We want you to hear that getting a service, getting housing is not the end of our path; it should be a new beginning. For some of us, it has become the end of that path.
We want you to hear that the goal of the State’s mental health system policy is to help us ‘liberate’ ourselves from the shackles of mental illness, not to tied us and make us dependent on that system.
Granted, and the audience agreed with Mrs. Tashjian, there are some people who makes it difficult to help them. But those are, probably, the ones who are either in the midst of ‘episodes’ or maybe the sickest one. Unfortunately, those are usually the ones who, out of making the job more difficult, ankles the work-culture to paternalism, stereotypes and stigma. Hey, we all suffer from those problems, it’s not personal. We can only confront ourselves on those matters.
The big secret
It amazes me how difficult it is for our administrators and providers to internalize that abuses and neglect is the element referred to in the maxim ‘first, do no harm’. For some reason, despite past and present history, despite it having been the reason for the dismantling by Governor Cuomo of the Commission on Quality of Care and Advocacy and his creation of the Justice Center, despite reports in our mainstream media about abuses, no one in the system wants to talk about it; no one wants to acknowledge it. It is as if we were shouting at someone who has no ears.
And the outcome
The outcome of the meeting was that more answers are needed. I think Mrs. Tashjian said she would find more information about the legal difference between licensed and unlicensed housing; also, that she would look into the OMH’s website to see what errors there can be corrected.
I would like for her to look specifically at the fact that the only distinction between licensed and unlicensed housing (“community residence”) is that in unlicensed “there is no rental assistance”. As I told her, the majority of these housing provide such assistance and yet they are classified as unlicensed. Not only that, there is no reference to the fact that regulation and monitoring is not included in unlicensed.
I’m convinced that trying to clarify the difference between licensed and unlicensed is going to show how convoluted these distinctions are; that clarification is near impossible due to the many funding sources requirements. But more important, because OMH doesn’t want us to know that its policies try to unburden the providers from accountability and the only way of doing that is unlicensing. De-regulating the system is the way to unburden the providers. But then, we are left carrying the burden.
Mrs. Tashjian has nothing to do with that, I think. She doesn’t make policy, does she? I think she is going to find things she was not expecting to find, nor wanted to find, if she looks seriously at the issue of licensed and unlicensed housing. It’s an ugly bureaucracy out there.
I wonder if she would be as open with us, as she was yesterday, were her to find out the nasty truth about license and unlicensed.
More to come this week end on this topic.
Yet another interesting article in the NY Times on our favorite topics, guns and mental illness. This one was written by JOE NOCERA, appropriately titled ‘Guns and Mental Illness’. See https://www.nytimes.com/2012/12/29/opinion/nocera-guns-and-mental-illness.html?hp&_r=0
I mean, is the best way guns are discussed now a days, as associated to mental illness. Hey, they go together like arroz y habichuelas, rice and beans for you monolinguals out there.
I don’t know if I’m getting over-sensitive about the topic of mental illness or that these journalists are just plain insensitive. It could be both…nah, they are really way too detached and insensitive. The case is that the blame-the-mentally-ill-and-lock-’em-up is getting to be nauseating.
The first thing that strikes me about Mr. Nocera’s article is the use of the label “liberal”, a word associated in good ol’ USA with everything…not conservative, let’s say. You know, if you feel that the poor must be left to die at the entrance of the emergency room because they don’t have money or health insurance, you are NOT a liberal, which is a good thing according to the not-liberals. So, Mr. Nocera uses a word that conveys this to America:
Thus, he pretends to write an ‘impartial’ article about the topic of mental illness while at the same time using an emotionally loaded political word, “liberals”, to invalidate the political stands of the advocates for the protection of people with mental illness.
From the outset, the tone of the article is that those who advocate for the mentally ill are wrong because they are liberals. Not only that they are “liberals”, but they suffer from “liberal impulses”:
Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.
Is he trying to equate the struggles against oppression to some kind of mental illness?
When he mentioned “a national disgrace”, Mr. Nocera was not referring to “The last disgrace”, the title of Geraldo Rivera’s documentay in 1972 about Willowbrook and the atrocities committed in these institutions. That’s the background for the “deinstitutionalization movement” to which Mr. Nocera refers, but conveniently he skips that background.
He talked about “over medication” in hospitals as the problem. Sure, sure. “Over-medication” was what those children got when subjected to medical experimentation in the ‘institutions’ for the mentally ill and the ‘retarded’, as they were then called. That topic of torture in States’ psych hospitals is tabu for these journalists. But, that’s the mental health policy they are selling to you, to go back to the houses of horrors.
THE LIBERAL IMPULSES vs THE OTHER IMPULSES
What would he call the racist society of the 60s and 70s? He didn’t talk about the ‘racists impulses’ that caused the Blacks to organize the civil rights movement as a self-defense movement. Nor did he talk about the ‘sexist impulses’ that motivated women to unite against them. I wonder if Mr. Nocera would consider today’s women’s movement in India against rape-as-tradition a ‘liberal impulse’, not as a movement for self-defense.
What I want the reader to notice is the consistent and persistent omission by these ‘impartial’ journalists of the details about the atrocities committed in those ‘institutions of healing’. No mention that people were involuntarily committed just for being ‘different’ or politically ‘liberal’. Nooo.
Mr. Nocera talks about how throwing the mentally ill out of the ‘institutions’ into the communities was worse than what they were suffering in the hospitals. He neglects to tell you that these ‘liberals’ wanted the services in the community and that it was the States that refused to provide them.
If today you have housing for the mentally ill, less homeless mentally ill, it is thanks to those ‘liberals’. Of course, the ‘liberals’ are losing the battle today against corporate greed and, as a consequence, you will see the same problems you see when our political leaders suck your money out of the communities and into permanent wars and for Wall Street profit.
The pro-institutionalization stance in these articles is so subtle that you find yourself at the end wanting it as a remedy to today’s problems.
With the mentally ill rarely institutionalized for any length of time — on the theory that their lives will be better if they are not confined in a hospital — other institutions have sprung up to take their place.
He is alluding to that article the other day http://www.nytimes.com/2012/12/27/nyregion/new-yorks-mental-health-system-thrashed-by-services-lost-to-storm.html?smid=pl-share about how the situation for the mentally ill have worsen since storm Sandy. Funny that he refers to that article because it shows that the problems with institutionalization are alive and well:
“I cried when I saw her,” Ms. Rosa said. “I found her in horrible conditions. She was lying in her own feces, she had a fractured leg and the provider could not explain how her leg was fractured.”
Today, as yesterdays, we have reports of abuses in state-run home care institutions, or in those private ones contracted by the state. There’s no way you can claim that locking people up is good practice. Historically, State-run institutions are places for experimentation and abuse. We have a Center for the Protection of People with Special Needs because you can’t protect them not even in the new millennium. The Center was created THIS YEAR as a result of continued abuses for the last 12 years.
Look, whatever you do, DON’T GO BACK TO WILLOWBROOK, DON’T GO BACK TO FORCE INSTITUTIONALIZATION.
It’s all about money. You take the money away and you have to use repression as your ‘best practice’.
And Liberals, beware. They want to label you ‘crazy’ and lobotomize you.
It’s all coming back at gun point, pun intended.
What to do? I will give my suggestion soon.
Yahoo news published an article [ “Sandy hook shooting: Was Adam Lanza lashing out against treatment?”] stating that the mainstream media, particularly Fox News, is circulating the rumor that the Connecticut shooter acted out his fear at the possibility that his mother was about to commit him involuntarily to a psych hospital, implying that he ‘snapped’ and went on a shooting rampage because he didn’t want to be hospitalized.
If ‘forced hospitalization’ means against your will, if you know or have heard that people are forced to take drugs, forced into electroshock, treated as a lab subject and other psychiatric beauties, could a person be so traumatized about involuntary commitment as to ‘lose it’?
What that kid did was unspeakable. You can’t look for logic there. But he was the product of our society. If you say that he was terrified of the idea of forced hospitalization, think: why would he be so terrified about it? If the system is fine, the treatment fine, you shouldn’t fear it, should you?
I believe that the psychiatric profession and the mental health system should be indicted for the crimes they commit, the abuses in the name of ‘for your healing’, but I would not consider the evils that they (and the pharma) do as a reason to go killing and call it ‘self defense’. That is not what happened here.
Nonetheless,that indictment will never happen either.
THE TRUTH ABOUT THE MENTAL HEALTH SYSTEM
This is a highly repressive and brutal system, all behind the curtains because you don’t want to deal with it. Read the reports.
Go ask any person who receives mental health services what they think of the mental health system. Let them speak FREELY. Most of them will tell you that the experience in this system can be terrifying. Ah, but you don’t want to hear it from them. So, they fear that if they tell you the truth, the hidden label they carry (oppositional personality or borderline personality or anger management or confrontational disorder) will be used against them. Everything is honkydory. Uhm.
You need to deal with the system, the psychiatric profession. Repression is not the answer. Sending the mentally ill to fill the prisons and continue the torture there is not the answer.
We are closing hospitals, not because we have solved the problem of mental illness, but because WE CAN’T SOLVE IT. We claim there’s no money, so we close them and send your loved ones to the emergency room and from there, if they survive, possibly to prison. Prisons are our new psych hospitals. Somebody is benefiting from having a dysfunctional mental health system and that somebody is NOT the one who receives the services.
I can imagine, on the other hand, the emotional reaction of the public to those ‘news’ about the possible cause of the tragedy. There must be anger at the mentally ill who do not accept ‘treatment’, who refuses to be hospitalized, because, after all, the ONLY reason for refusing treatment must be an irrational reason. How dare you refuse treatment and go on a killing spree?!
DID WE LOSE THE ARGUMENT AGAINST INVOLUNTARY COMMITMENT
For the people who receive mental health services, this public conversation about involuntary commitment is a lost battle from the outset.
First because the conversation is between ‘experts’ and the ‘advocates’ of the mentally ill, together with a lay public who understands very little about mental illness or about the experience inside those great institutions of ‘healing’.
The public’s understanding about mental illness is basically wrapped in stereotypes, prejudices and in the information coming to them from ‘experts’ who benefit from the ‘crazy people’ who populate their profits. Think the pharma and health insurance, non for profit, researchers, prison owners among others. They are all invested in having mentally ill people. The worse the problem, the more you need them, isn’t that the case?
Those receiving mental health services are not included in the conversation about what to do with people like Adam, and yet, they are the ones who have the data about what needs fixing in the mental health system because they suffer those problems in their own skin.
Quality of services are always measured WITHOUT the input of those who receive it. I may be your co-worker, but what right do I have to tell others how bad you keep your house? Only you can talk about your home. Same here: EVERYBODY talks about the mental health system except those who use it.
WHAT MUST WE DO WITH THE TERRORISTS?
And the second reason why we have lost the battle is because this conversation is taking place in a TOTALLY emotional context: a mentally “deranged” kid killed 20 children. The outrage is collective. No one wants to hear you if you have a ‘diagnosis’. The moment you open your mouth to say something they tell you must trust your psychiatrists and take your pills.
Take as evidence of the emotional tone this week’s article in the NY Times equating the mentally ill with middle eastern terrorists [“What moves suicidal mass killers”]. [See my previous post.]
From there on you can only go down; there’s no redeeming quality in those afflicted with emotional problems: they are ALL terrorists because they can ALL snap at any moment. What must we do with the terrorists? Hmm?
PROGRESS IN THE NEW MILLENNIUM: POLICE KILLING UNARMED MENTALLY ILL PEOPLE
But no body talks about the continued history of abuses in psych hospitals, home care institutions (both on the physically and the mentally disabled) and community housing for the mentally ill. Nor about the fact that the chances that your unarmed loved one will be ‘assassinated’ by the police in ‘self defense’ while trying to violently take him or her to involuntary commitment are extremely high. Well, at least here in NYC.
In the new millennium, the NYS Governor, Mr. Cuomo, had to create this year [not 20 years ago] a Center for the Protection of People with Special needs. That center came out, first, of the 10+ years that the NY Times was reporting abuses to the mentally ill and “people with special needs”, including rapes and physical and psychological abuses, with no one in the bureaucracy doing something about it.
Secondly, the Center came on the heels of a court decision in NYS overturning a lower court ruling that the Office of Mental Health (OMH) and some non for profit home care contractor were abusing the residents. On appeal, the higher court decided that OMH was right in arguing that the advocacy lawyers HIRED BY THE AGENCY ITSELF (OMH) had no right to protect the residents because, among other reasons, the residence was unlicensed and the residents didn’t vote to have the advocacy group represent them. Now, that’s ‘crazy’, isn’t it? I’m not making this up nor misinterpreting. The case is Disability Advocates Inc. v Paterson, decided this past April. So, those people are still been abused in the hands of their care takers. Nothing changed for them.
NOSTALGIA FOR THE LOBOTOMY IN THE ’50s and ’60s
You see, I can understand the frustration of those in favor of involuntary commitment about seeking help. We have those frustrations too. We ask for services which are denied or withheld by those who feel powerful over us. Then, when the consequences of withholding services manifest, the system forces the services on you. It’s INSANE.
The problem with those in favor of involuntary commitments start when they start messing up with our civil liberties and privacy.
There are other modalities for help, it doesn’t have to be forced commitment. Historically, forced commitment has led only to abuses. Get on with the new millennium.
But nooooo. That guy, Ferguson, in the article is nostalgic for the psychiatric modality of the 1950s:
But even if people are willing to be committed, it’s not easy to get such treatment, because the US moved away from the asylum system in the 1950s and ’60s, Ferguson says.
Basically, the article speak about the mentally ill from the point of view of those who are not mentally ill. The reference to them is in the third person. And there’s no mention whatsoever about the harm, the prejudices and stereotypes against the mentally ill in the article.
BIG BROTHER AND SISTER TO THE RESCUE
Nothing good for our society is going to come out of this ‘conversation’ as long as you keep the focus only on the mentally ill. We are in times of political and economical turmoil. You have to keep in line or else…
Our NYPD has already started to act on that image of the mentally ill as terrorists. Take a look at my previous post, here is a quote from the NYPD:
“Mr. Kelly said the technique was similar to those being used to spot terrorists’ chatter online. The new searches would target “apolitical or deranged killers before they become active shooters,” he said. [Highlights by me]
We have to change now how we speak online. ‘Say something’ but be careful not to get tagged as terrorist by using the wrong words to do the report.
Out of fear and ignorance, the public is going backwards for ‘protection’. They want to go back to forced institutionalization.
Been there, done that. It was horrific.Think Willowbrook. It happened in NYS again in the late 1990s. You didn’t hear about it. That’s the problem: you don’t hear about it until the damage is done.
Just remember this: your irrational remedies, they will all come back to bite you.
You need to deal with the system, the psychiatric profession. Repression is not the answer.
LISTEN TO US.