Tag Archives: consumer advisory board

Cuomo Agrees to Plan for Housing Mentally Ill, Ending Legal Battle


This is breaking news in the NY Times. Cuomo Agrees to Plan for Housing Mentally Ill, Ending Legal Battle

This is an agreement to ´right´the wrongs committed by many NYS adult homes providers and that NYS judge that made that appalling decision in the case DIA v NYS-OMH etc in April last year. This agreement is a step forwards towards moving the people in those ‘homes’ of horrors to the community.

Am I personally happy and satisfied with this? I don’t go jumping with joy without first taking a quick glance to the text of the so-call ‘agreements’ and new laws to ‘protect’ people with disabilities of all kind. Why? Because one thing are the sound bites we get in the media about how great a new law is, another is the TEXT and the IMPLEMENTATION.

Now, with this agreement, everybody relaxes and forget about it. Just like with the Justice Center, we will assume that the government is looking to protect us. Nothing happens unless you threaten the government. Not even this agreement, the result of years of court battle with the state.

OK. I will NOT sour your joy. IT IS A STEP in the right direction.

I will tell you where we must put caution in this agreement.  You can read the agreement on your own here courtesy of Judge David L. Bazelon Center for Mental Health.

Suffice it say that the agreement WARNS those Adult Homes providers previously caught abusing the mentally ill that they should not interfere with their residents in this process of moving them out, or they ‘will be punished’. Adult Homes are going to lose $$ and they want to keep their houses of horror filled. That there is a NEED for a warning to them should tell you a LOT. (See page 8, part 4 in the agreement.)

First quick notes:

From “definitions” (pages 4 and 5):

1. You have to be 65 years old or under to qualify for the benefit of the agreement.

2. The agreement MAY take 4 or 5 years to be completed. If you are 62 now and you HAVEN’T been relocated within the next two years, you may not qualify anymore. Or at least the agreement doesn’t clarify that. This is a question that those of you in Adult Homes (AH) MUST ask the people involved in this agreement.

3. As usual, the agreement applies to AH that are LICENSED, per Social Services Law Article 7. If you are in an unlicensed one, you may have problem qualifying for the agreement. YOU MUST SEEK CLARIFICATION ABOUT THIS.

4.  AH with LESS than 80 beds do not qualify for the agreement. It (“transitional AH”) has to have 80+ beds AND  a “mental health census” of 25%. If you are in a small AH, you may want to confirm that it qualifies for the agreement.

5. “Impacted” AH are those in NYC with 120 beds or more AND a mental health “census” of 25%  of the population of the AH.

MENTAL HEALTH STATUS: Not so fast baby.

To qualify, a mental health evaluation to measure your level of functioning will be implemented. This is where the ENACTING may go astray, leaving people who are not dysfunctional ‘enough’.

1. Must have a mental diagnosis based on THE MOST RECENT DSM book.  I would say, tread with caution here.

  • ‘what if I my diagnosis is not in the book anymore? They removed some and added new ones.’ See my point?

2.  Excluded from the agreement are people with developmental disabilities, mental illness due to brain damage, and “SOCIAL CONDITION”. I’m as lost as you are on that last one. Looks like a loophole to keep people in. Must check the DSM bible for clarification.

3. “Must have a  SUBSTANTIAL FUNCTIONAL disability WITHIN the PREVIOUS 24 MONTHS before the date of the agreement.” Do you know what a “substantial”  functioning disability means? I suggest you look it up if you want to get out of there. Plus, it is ‘within’ the last 24 months of the agreement. Better check it out how that may affect you too.

4. Who will determine your disability, your substantial functional levels that will ALLOW them to put you in a supported housing?

  • a determination by SSA that you receive benefits due to mental illness will not be enough.
  • A “Health Home agency” AND a  MLTCP (managed long-term care Plan) will be in charge of the process of evaluating your qualification for the agreement. Even if SSA says you are disabled, these people may determine that you are not ‘substantially‘ dysfunctional and may disqualify you. See #5, subsections (b) i and ii on page 5.

So don’t assume that you automatically qualify to be relocated out of the AH just because you are there.

“PERSON-CENTERED PLAN”. Where have I heard that before??

Right, those of us in Supported Housing (SH) are struggling with “person centered support”. Welcome to our struggle. But, I will NOT deny that chances are that, if you make it to a SH, you may be better off than there. Just don’t come here thinking ‘wow, I made it. I’m out of danger’. Nope.

Now, I couldn’t find the dates for the agreement. If any of you find that info, please, forward it. It’s important to you, if you are in one of those homes,  because of the transition schedules. You don’t want to be left out.

My take about this:

1. This is a good step forward.

2. ALL THESE PEOPLE who are coming to the community are going to face the reality of what we have here: SH is over 80% unlicensed. This means, you have NO LEGAL PROTECTIONS there. People centered treatment does not exist. It’s a craps shoot.

3. the ‘culture of abuse’ that exists in those AH will relocate in the community, following our new ‘freed’ peers, with those workers who will get jobs from there to here.

4. TODAY MORE THAN EVER  we need to ORGANIZE our people. For ‘people centered ‘ services we NEED TO BUILD THOSE CABs.

5. Never has the state given ANYTHING without a fight. The NYS WILL BE crying ‘BROKE’ to avoid completing this agreement and creating housing for them. If you want to trust them 100% despite what history shows us, fine.

This is my first reaction to the agreement. Sorry if I sour your joy. I doubt it, though.

CONGRATULATIONS TO THE FORMER DIA.

GOOD WORK.

Welcome And good luck for those of you moving here to the community ‘with us’.

Like we used to say in the ’60s: the struggle continues.

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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

The Citywide Mental Health Project’s presentation at the NY City Council hearings on budget cuts to Mental Health services.


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.

  • At a time when the mentally ill is been blamed and penalized for the violence and degradation of the social network  that comes with budget cuts
  • when privatization and decentralization of the functions of our government is almost complete (see the governor’ SAGE report),
  • when soon the quality and goals of our mental health services will be directly determined by how much profit they generate to Goldman Sachs and Wall Street in their new investment scheme called ‘pay for success’, in these times our role shouldn’t be limited to be consumers.

 

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.

On OMH’s unlicensed policy


On OMH’s unlicensed policy is in the form of  a Word doc here

Privatizing NYS public mental health system, one rule at a time. Part 1


This is the first of a series about NYS OMH’s and the Department of Mental Health’s licensing policies. This is intended for my ‘peers’, to share what I have learned in my dealings with the mental health system. It took me a long long time to understand and put this together. Thus, I want to save the time to others.

Note: I am not a lawyer or paralegal. This information can’t be taken as legal advice (better believe it) nor as reliable for any legal purposes. In other words, I’m not responsible for the misuse of the information on this post.

Some topics I will cover this week  are: ‘best practices’, OMH report last year advocating using unlicensed workers (case managers) to provide the equivalent of psychotherapy, and the SAGE report. Let’s start.

NYS Mental Hygiene Law (MHL)
Title E, Article 31: Regulation and quality control of services for the mentally disabled

Section 31.02 Operating certificate required.

Some judges in our State’s courts have alluded to the simplicity of the title of that section 31.02: ‘operating certificate required’ (op cert here on). It flaunts purpose and determination: ‘op cert required, period.’  It is a declaration of State policy. It is a mandate. So why has OMH de-certified more than half of our mental health programs and providers, basically privatizing our public system?

According to the New York State Consolidated Budget and Claiming Manual there are a total of 90 types of mental health programs under OMH. Of those, 22 are licensed and 68 are unlicensed. OMH reported in 2012 that of a total of 6759 programs, 4646 were unlicensed and 2113 licensed.

Source: “Reports on the Workforce From State Agencies”   (OMH”s report)                                    March 2012

Source: “Reports on the Workforce From State Agencies” (OMH”s report)  
  March 2012

Do these figures matter to the consumers and to the public, who may one day find itself tagged as ‘client’? Let’s take a look at what a licensing policy accomplishes.

By the way: do you know how many license categories OMH has?

1. Licensed
2. Unlicensed
3. Not-licensed(!)
4. Certified
5. Operated by OMH
6. Regulated by OMH
7. Approved by OMH
8. Funded
9. By auspice
(From various sources, including the New York State Consolidated Budget and Claiming Manual)
 

Putting licensing policies in perspective:

safetynetA State’s licensing system reflects  its policy towards the issue it is licensing; it is part of the policy system.

Policy is the decisions and actions taken by the state:

  • to fix a social problem,
  • to protect and
  • to offer a better quality of life for its citizens.

The golden rule of all policies is ‘first, DO no harm’. It is so golden that it is alluded to in OMH’s ‘Rule 501.3 Waiver’:

(2) The commissioner may grant a waiver of a regulatory requirement…if he/she determines that:

(i) the rights, health and safety of clients would not be diminished; (The commissioner’s discretionary powers can’t be used if they  cause harm. Well, at least in theory.)

All policy systems have a feedback mechanism for those who receive the benefits of the policy. Through it they let the policy-makers know how effectively and efficiently it is working. Our state’s mental health policy is in NY Code – Mental Hygiene, Title B MENTAL HEALTH ACT. Consumer advisory boards (CAB) are the feedback mechanism, including for feedback to providers in the programs where the consumer is receiving the services.

The three characteristics and purpose of a licensing system:

  • To protect the public from dishonest practices and bad quality of services, and from violations of consumers’’ rights.
  • To regulate the profession or business in question. In our case, it regulates the (mental) health services industry. As a regulatory tool, it has the state’s police-power behind it: violators can be arrested and prosecuted.
  • It is a mandatory credentialing process that prohibits anyone not licensed to practice the profession or business in question.

We see all this in: “NYS Mental Hygiene Law, Article 31: Regulation and quality control [to protect] of services Section 31.02 Operating certificate required [the mandate].

Without its licensing policy, the state can’t protect, regulate or monitor its system. And the courts know it:

Hirschfeld v. Teller, NY 2010

Here, OMH decided that licensure was not required. Because only OMH is authorized to determine whether a facility is required to have an operating certificate and MHLS’s jurisdiction is expressly limited to licensed facilities…defendant it's the lawnursing homes are entitled to summary judgment dismissing the complaint.

And our state legislators, who are aware of the problem of licensing un-compliance, stated in law bill  S4858A-2011:

Lack of progress on licensure has a direct consumer impact. Without full implementation of the law, New York’s seniors cannot age in place and cannot take advantage of the numerous protections and disclosures contained in the statute.

That’s why it says “op cert required”. Once you choose to practice a regulated profession or business you can’t choose to be or not to be regulated, or both.

 But wait a minute!! With OMH you CAN be BOTH!

In a Q&A about request to run a business for housing for the mentally ill, the question was whether OMH would accept unlicensed units in a licensed program. But of course, why not? Hey, it’s not like the tenants care that you misrepresented the program as licensed but they are actually in de-regulated ‘units’. ‘It’s all about funding requirements, don’t worry, be happy. Trust me.’

And you can also report, with OMH,  as unlicensed a licensed program, and the other way around. For example, in the State’s Consolidated Budget Report, OMH’s:

1510 – School Program Co-located with Clinic Treatment Program (Non-Licensed Program if reported under this code) This program cannot be used to report expenses or revenues associated with services provided by the licensed Clinic Treatment Program (2100). [Parenthesis from the quote, highlight by me.]

2600 – CPEP Crisis Beds (Non-Licensed Program) This program is one of four program components which, when provided together, form the OMH licensed Comprehensive Psychiatric Emergency Program (CPEP). [Which is a licensed program.]

Tomorrow I will comment on the license policies of both the Department of Mental Health and of OMH.

The situation out there


Chasing the money

It seems that our community has been forced into a tug of war by our government -state, federal and city- to protect our services from being decimated under the excuse of ‘economic crisis’. More money has been lost yearly in financial corruption than what is needed to keep small programs running: the recent CityTimes’ scandal in our city is an example.

This is the game we are forced into by the powers that be: stay focused on trying to keep programs open: low quality of services, abuses and mistreatment, our lack of meaningful participation in shaping our so-called public mental health system and programs policies, these issues are perennially moved to the back burner.

And our justice system seems unavailable for us too.

THE JUSTICE SYSTEM: hmmm.

Despite so many laws supposedly there to protect us, few cases brought to courts by legal advocates denouncing discrimination and physical and mental abuses in state and private institutions are actually won. Then many are overturned on appeal. Example, DAI v OMH (among other defendants), a case about abuse and discrimination of people with disabilities won in 2010 but over turned in April 2012 on technical legal grounds: OMH argued successfully that the non-for-profit legal group it itself hired to advocate for these people had no right to do their job! Go figure.

There is no expectation that the mentally ill will find in courts relief from abuse. The long arm of cultural stereotypes and prejudice about the mentally ill reaches our courts. The actual reason for the new 2008 ADA amendment was precisely that our nation’s court, all the way up to the SCOTUS, had been circumventing the ADA 1990 to deny relief from abuse to people with disabilities. In the “findings and purpose” of the amendment, it states, among other things: “(4) the holdings of the Supreme Court in Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999) and its companion cases have narrowed the broad scope of protection intended to be afforded by the ADA [1990], thus eliminating protection for many individuals whom Congress intended to protect;”. To remedy this legal abuse, the amendment relaxed the definition of disability, among other things.

Many judges have done the ‘homework’ and have been allies of the mentally ill/disabled, but there are still a few who betray that culture of stereotypes. It shows in uncompassionate rulings.

The operating stereotype is still that the mentally ill must be mentally deficient and simple-minded,  a dependent  child-adult, not a citizen with political and human rights capable of thinking and standing for himself; otherwise, he or she must be a faker. Or, the interests of a whole group of people being physically abused (as in the case above) must be relegated to the interests of the ‘non for profit’ business or to protect legal technicalities.

We must carry our labels everywhere we go and have our social worth measured against them.

If you think that the new Justice Center for the Protection of People with Special Needs will change this, you are up for a rude awakening, again. But that’s topic for another time.

POLICY MAKING and citizenry

I have been speaking recently to some of my peers in the community about how they rate their participation in their programs.  The message I’ve been getting is pretty much generalized: they feel voiceless in their programs and treated in undignified manner. It seems to me that my peers suffer not only from chronic mental illness, but from a chronic lack of political power, they are treated as less than full-fledge citizens.

The ‘public’ mental health system in our state (and federal) is based on a carefully studied and planned mental health policy. Ingrained in all policies is, or ought to be, a mechanism for those directly affected by it to provide feedback about how efficient these policies have been in achieving their goals. Hell, even Staples asks for consumer feedback. So, our mental health policy gives us the Consumer Advisory Boards (CAB) or councils at state, city and program levels. These CAB are tools we have gain through years of struggles to participate in the system to have a voice, not ‘gifts’ from a benevolent state. But few consumers know about ‘policy’ or about CABs.

WE ARE NOT ALLOWED TO TALK ABOUT IT

The efficiency of  a legal or mental health system is measured, in part, on how good or bad YOU are being treated by  it or in it, how it feels on your skin,  not on the ‘quantity’ of laws and services tabulated. If our feedback is being heeded then it should reflect at least in superior quality of services or on how we are not been abused. Take note of these facts, though:

  • The Medicaid Redesign Team described our mental health system as “fragmented”. Imagine that, they gave it a thumb down. Evidently our “feedback” has not been heeded.  A “fragmented” system is by nature unaccountable and insensitive to the needs of those it’s supposed to serve.
  • The new Justice Center for the Protection of People     with Special Needs comes about as a result of all those articles in the NY Times since at least 2002 denouncing  Willowbrookesque houses of horror for the mentally ill in our state.  In the new millennium of technological advances, of cellphones and surveillance cameras under our noses, we are still facing the inhumane treatment behind closed doors of the mentally ill in the hands of those paid to protect them.
  • There are hardly any CABs in the programs we attend; the few out there are totally inefficient to collect our feedback and help us make the system and providers more sensitive  to our needs and humanity.

Overall, there is a pretty wide cloud of consumer dissatisfaction with our mental health system, its quality of services and the lack of true participation in the system. We are just not allowed to talk about it.

Let’s face reality:

·   The system is in dire need of repair

·   Our consumers’ movement has been  mainstreamed, forced to focus on the financial aspects of the system.

·   The system has given us the first salvo signaling the end of the ‘benevolent’ mental health system: the unprecedented arrest of ADAPT activists in DC this year (April) where they were denied legal access to their lawyers. Read in ADAPT’s website the information and updates.

·   Incidents of police killing people with mental  illness in distress are rising.

It’s time for us to start speaking up about these things which are taboo now-a-days. I would suggest opening the discussion via some consumers’ conference in the city. I invite my peers to open this discussion soon, for our nation is turning into a surveillance state in an effort to keep everybody ‘normal’ and ‘safe’ from people like you and me. After the current Colorado killings, people are commenting “we need crazy control, not gun control”.

Be ready. Be very ready.

Re: NYS Law 7400 creating the Justice Center for the Protection of People with Special Needs#6


(f) where applicable, establishing uniform procedures for character and competence reviews of provider agencies initially, and upon renewal of licenses and operating certificates requiring a review of performance records regarding incident management, the role of the board of directors in maintaining oversight over agency performance in this area, and the management of incidents affecting resident safety, including cases of systemic problems.

Ay ay ay! Again??

Many many years ago OMH had a system where they would post in their website info about how many complains against providers have been received and how close they were to lose their licenses. That was when the ‘not licensed’ was not so widespread. Then they stopped this practice because…well, you guess why.

For many many years afterwards, complains were not recorded, period. Now we are back at doing what they really don’t want nor intend to do.

In the first instance, complains from consumers in ‘not licensed’ programs will automatically be left out. Mind you, more than half of all programs are ‘not licensed’. I claim that our ‘public mental health system’ does not exist. If more than half of the programs are not licensed, meaning private, how can we claim to have a ‘public mental health system’?

There are better ways to keep track of complains including letting consumers figure out how to keep track of their complains in the programs.

In the second instance, how do you determine ‘character’ when those affected by that character can’t inform you whether they have been treated with dignity or not?

Have you noticed that this new bill has no provisions for meaningful consumer input?