Tuesday, April 29, 2014

More insight ten years after I started dealing with these "disability advocates:" This email was my response upon realizing finally someone means business and is doing something with collective insistence.

I'm reading all this with a big smile on my face. I'll read this entire email some other time but nothing is a surprise to me.

About fifteen years ago (into losing my life to NYS) other people are finally rocking the boat Iike I've been doing all along. Thank you Mr P from Bronx or Brooklyn (? I can't remember but I met you once at a Brain Injury Coalition meeting). The Judy I remember from years ago I thought had the last name Sarver but I could be wrong. I just know I beat my head against the wall with yet another person in "TBI Services" and the local FACTS coordinator named (ummm...searching memory...I'll get there...let me use google as a memory tool...her brother owned/ran the Grill and she wound up moving to Massachusettes...Evelyn Carr!) put me down for burning my bridges with yet another person in the state. But guess what? There's nothing to burn. Nobody's home. I'm guessing the State has it's secret financial resources set up of the haves and have-nots and the disabled fall under the have-nots so these people with the state abide by the secret rules.

Thank you P for stepping up to what will cause the death of me because there is no way I'm going to survive at this point - but at least I'll enjoy my last terah and the government will be stuck with my debt I should have been paying off ten years ago. My high work ethic self has been beaten to a pulp. I'll survive if NYS eats the cost of this life it ruined. I had a neuropsychologist from my home state write a letter for legal assistance in returning to state disability services and no lawyer in NY would touch it (elsewhere was too far away). If you do your legal research on Legal Aid going against these agencies, at some point the funding was changed that Legal Aid isn't provided money any more to take on these type cases AND Legal Aid receives it's funding from guess who? The very state services everyone is having a problem with. So sad! Some lawyers I went to said that the state can do whatever it wants. There you go! That's us! We're hidden behind this archaic tomb that doesn't have to answer to anyone. I wouldn't wish the Karma NYS has coming back on itself to anyone! I was never supposed to be living like this! Not in a million years! I had a life before it got thrown away to NYS!

See; Judith collects her paycheck like all the other "advocates" in the state. Seventeen years later nothing has changed except possibly sounding more politically correct and god knows what else. And what happens to us? Same wheel spinning. Kudos to you Peter if you finally break through. Long ago I thought for sure my educated and objective point of view was going to make a difference. It didn't. Maybe now with social networking there will be enough voices to rise up. Speaking of social networking, what do you think about Facebook as well? I'm "Occupied Newbie" on Facebook. I'm usually not so open about my info but I'm just to the point of letting all go.

Occupied Newbie

--- On Wed, 9/12/12, P wrote:

From: P
Subject: Re: For Judy
To: "Judith Avner" <JAvner@bianys.org>
Cc: long list of all involved in the welfare of this subject matter
Date: Wednesday, September 12, 2012


We'd not received a response for a request for a message board. We know several of us have asked for one.  The idea, as has been explained, is that the message board would serve as a place where members could communicate with leadership and each other. The idea was not to have one person to call.
I did not know that only Marie speaks for the organization. I've heard you speak for the organization countless times over the years. How are we, as members, supposed to know when it is you and when it is Marie. This appears to be what many of us feared, a well-worded response which, said in a direct line, goes like this: The answer to the request for a message board is NO. Call Marie, not me. Am I wrong?

I've never heard of a non-profit where the board president, a volunteer post, interacts with members while paid staff like yourself remain silent. Board presidents usually have separate full-time jobs. Marie does.

You say: "Our days are filled with responding to, advocating for, and supporting people who reach out to us for assistance" and here we are asking for a message board so we can all communicate. 

How is it that your "days are filled with responding to, advocating for, and supporting people who reach out to us for assistance" and when those you are responding to, advocating for, and supporting ask for a message board the answer that's not possible? What on earth could be the problem with a message board? What on earth could you be afraid of? The only thing I can think of is you do not want to put anything in writing. 

A cynic would say that your pointing out that Marie "invited people who have concerns or needs to contact her directly by email or telephone" is yet another way of your trying to keep your footprints off of as much as possible. Moreover, no one was taking about the message board as some kind of complaint process, or a process solely for concerns. We were talking about it as a way of communication that would be inclusive, informative, and provide a way for members across the state to communicate with people in Albany like you.

So, to be clear, is the answer to a request for a message board is no? 

If the answer is no, it further underscores RB's point that we might be listened to but no one hears what we are saying or, for that matter, cares. 

I think the request for the message board should stay on the table and I think communicating by email like this, in a group, is fine too.

I am one of many who are hoping BIANYS (you and Marie) does the right thing here.


On Wed, Sep 12, 2012 Judith Avner <JAvner@bianys.org> wrote:
Hello Peter:

Thanks for your email. I know that you have already received a response to your request for a message board from Marie Cavallo. As you know, Marie, as the President of BIANYS, speaks for the organization. In her response, she invited people who have concerns or needs to contact her directly by email or telephone. As always, people are welcome to call the office. Our days are filled with responding to, advocating for, and supporting people who reach out to us for assistance.

All the best,

From: P
Sent: Wednesday, September 12, 2012

To: Judith Avner

Subject: For Judy


At this point several people have expressed their desire for a BIANYS message board in the hopes such a board would improve communication between you, Marie, and BIANYS members. You have yet to take part in this conversation and I know a lot of us would like to hear from you, especially since a lot of us are BIANYS members. Thus far only Marie has responded. 

In my experience with non-profits I've never run across one where the communication with members is left up to the president of the board of directors while paid staff like yourself stay out of it. It just doesn't make sense. One of the reasons there is paid staff is to communicate with members, especially in cases like this in which many of us are on limited incomes and can't meet face to face at the  drop of a hat.

Silence leaves an empty space which is often filled with conclusions that may be inaccurate. For example, is the executive director of BIANYS willfully ignoring members of the organization she heads?

We would like to hear from you, you are important to us, and, we would like the message board which will improve communication and lead to less misunderstandings.



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