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 , 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.