Tag Archives: Willowbrook

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 188th St. Apt. 7M

Bronx, NY 10458

Things that need fixing in our mental health system


Things that need fixing in our mental health system:

1. Certification

The NYS Mental Health Law mandates OMH to certify all providers. Certification provides the legal covers that allows our public legal advocates to bring cases of abusive providers to courts. But, totally against the mandate, OMH has established since the 1990s, together with our State’s DOH, a policy of DECERTIFYING providers. At least half of providers and services are not licensed in NYS.

This decertification scheme has provided judges who are less friendly to the mentally ill in our State’s highest courts the ammunition to allow the continued abuse of the disabled and the mentally ill in not-for-profit agencies. The state knows it; it participates in the abuses and defends these practices in courts.

Refer to the DAI case. Ask yourself: why, in the new millennium, we are still struggling with Willowbrookesque cases; why did we need to create a Center for The Protection of People with Special Needs this year, not 20 years ago?

2. ‘Best Practice’: no monitoring of providers needed.

Without certification, monitoring is just a word among the many used to describe something that is not happening in our mental health system. In other words, ‘monitoring of providers’ is a delusion of our mental health system. NYS courts have decided many times that legal advocates can’t monitor the safety of their clients in places where complains were logged, because these places are not ‘certified’.

Quality of services is a mandate. There is no point in giving money away to ‘providers’ who will pocket the money and dish out substandard mental health treatment. But you can’t have quality of services because our DOH and OMH says that monitoring is not necessary for people who can “defend themselves” from bad providers.  This is actually in their ‘license’ rules. Since you can’t monitor or be defended in court, quality of services becomes an unenforceable fantasy.

3. No Consumer participation.

This is the ‘pet peeve’ of the Citywide Mental Health Project. Please, read our Vision and Mission.

Federal and state laws provide for our participation in the programs, to the policy level of the programs. These provisions are there for us to protect ourselves from the history of abuse, to prevent more abuses.  It’s part of a policy system that requires the feedback of those receiving the benefits of the policy.

If you can buy a ticket to the moon then we consumers can give feedback to our not-for-profit servers.

Our bureaucrats are mis-managing our mental health system. Look, we adore the corporate system, even our bureaucrats use that model.  Just as you find CEOs that destroy their own companies and still get bonuses, we have the corporate model in OMH. They mismanage the system and still get praised.

Meanwhile, down here in the communities, you are raking your minds about why we have Erika Menendez in the streets. You are asking the wrong question. Ask why  OMH so often the defendant in cases of abuse; why is our public system been privatized by a decertification scheme that leaves the troubled people without quality of services. Why are the families so often complaining that the ‘system’ has left them alone with their troubled child?

Don’t look for quick fixes. Forced hospitalization as a remedy to the problem is a delusion you are suffering.

Guns and Mental Illness and the “liberal impulses”. [revised]


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.

No pun intended with this image. Do you get it?

No pun intended with this image. Do you get it?

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:

Liberals are viewed as against the USA, unpatriotic people.

Liberals are viewed as against the USA, unpatriotic people.

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.

experimentation

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.

"Liberal impulses" in action. Mr. Nocera says liberals demands  are a disgrace.

“Liberal impulses” in action. Mr. Nocera says liberals demands are a disgrace.

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.

‘Bad liberals’ demanding no budget cuts
on mental health services. Go figure.

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.

Here we go again: NYC mentally ill person kills citizen.


Bloomberg, asked earlier Friday about the episode at a station on Queens Boulevard in the Sunnyside neighborhood, pointed to legal and policy changes that led to the release of many mentally ill people from psychiatric institutions from the 1960s through 1990s.

“The courts or the law have changed and said, no, you can’t do that unless they’re a danger to society; our laws protect you. That’s fair enough,” Bloomberg said on “The John Gambling Show with Mayor Mike” on WOR-AM.

Bloomberg leaves it for you to fill in the blanks there: the court has changed the rules since the 1960s, he says, and you can’t involuntarily commit these people who need to be thrown away; and you, dutifully, arrive to the conclusion he is leading you towards: ‘stupid laws’. He wants you to conclude that the laws that ‘protect’ the mentally ill are illogical, that the laws blankly  protect the deranged. Something must be done about that, QUICKLY, like for example, HEY, let’s change the laws!!! Let’s go back to the Willowbrook times and involuntarily commit people into houses of torture.

WHAT BLOOMBERG DOESN’T TELL YOU

He doesn’t tell you that in the 1970s and 80s, the reason why the states were mandated by the courts to discharge the mentally ill and people with ‘special needs’  from the psych ‘hospitals’  was that the ABUSES in Willowbrook showed the treatment these people were receiving in those houses of ‘healing’: they were being used for medical experimentation, torture, both children and adults. Please, go back and watch Geraldo Rivera’s documentary about Willowbrook.

Willowbrook: A house of horrors.

Bloomberg doesn’t tell you either that the states ‘complied’ with the court orders at that time by INTENTIONALLY throwing these people to the streets WITHOUT HOUSING OR SERVICES in the community. He doesn’t tell you that the 1980s saw the hard-fought war of communities with the states to house and service these people. All of the major problems we saw with the mentally ill in those years (1980s) were due to the lack of mental health services and housing in the communities because the states refused to put the money there.

Once housing and services started to be put in place, the problems with them subsided significantly. Bloomberg knows this, but he won’t remind you of this because he just wants the easy ‘fix’: lock ’em all up. Hey, it’s good business for the profit seekers, the prison builders. Prisons are now our psych hospitals. Just like in the 1980s.

Look, if you divert TRILLIONS of dollars and use them for ‘permanent wars’, for surveillance equipment in each of our streets corners to ‘protect’ you from who knows what or whom (the only paranoid here seems to be the  State and the feds), there is going to be no money for humanity here. It’s not like I’m saying something new or revolutionary. You know this. You just ‘forget’ for some reason.

Of course you are going to see more of these cases! Bloomberg makes cuts to social and mental health services and then expect that the problems HE causes with those cuts can be fixed with a mental health policy of REPRESSION.

He and the governor closed psych hospitals these past two years not because the hospitals alleviated the problems and were unnecessary but despite the problems of mental illness. It’s a mindless policy that functions based on a need for profit. This policy shows that the so-called ‘BEST PRACTICES’ is fiction. You can’t have best practices when the best practice tells you to keep programs open but the state wants to save money by closing them.

I doubt that anyone is against hospitalization IF the policy is to serve the person, not to torture he or she.

It’s a very complex problem. It’s not only what you see, but what you refuse to see in terms of our investment in wars.

CUTS IN FUNDS, FISCAL CLIFF AND PERMANENT WARS = SOCIAL INSTABILITY.

That’s all you need to know.

Make the necessary adjustments: SAY NO TO WARS AND CORPORATE AND BANKSTERS’ GREED.

My condolences to the family of the victim of this horrific incident. No one wins when we save money by withholding treatment.

Was the Connecticut shooter acting in self defense?


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.

AGAIN:

You need to deal with the system, the psychiatric profession. Repression is not the answer.

LISTEN TO US.

what have we learned from the history of abuse of with mental illness?


This is from a short powerpoint test I made. See it in full screen. It has sound half way into the vid, so control your speakers.

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.